DMRF eNews
October 2009 - to ensure delivery, please add
[mailto:enewsletter@dystonia-foundation.org]
enewsletter@dystonia-foundation.org to your address book.
Monumental Research Grant Awarded to the Dystonia Community
We are pleased to tell you that the National Institutes of Health (NIH)
have announced the funding of a five year, $6 million award aimed at
forming a multicenter Dystonia Coalition to cultivate a better
understanding of the primary focal dystonias and find better therapies,
including Cervical Dystonia, Spasmodic Dysphonia, Blepharospasm, and
others. Leading the Coalition will be H. A. Jinnah, MD, PhD, of Emory
University and his co-director is Joel Perlmutter, MD of Washington
University. The Coalition will bring together the most committed dystonia
researchers in North America and Europe, along with dystonia patient
advocacy groups. The Dystonia Medical Research Foundation (DMRF) is proud
to play an integral role by providing logistical and planning support for
the Coalition. The first meeting of the Coalition is scheduled for November
5th.
For more information, please [http://dmrfinsights.blogspot.com/] click
here.
DMRF receives the Child Neurology Foundation Advocacy Award
The DMRF has been selected as the 2009
[http://childneurologyfoundation.org/main_awards_4.cfm] Child Neurology
Foundation’s Advocacy Award of Merit recipient. We are thrilled to
receive this award from CNF, an organization that is dedicated to
advocating for children and adolescents with neurologic disorders. In
announcing the award, CNF states, “The Dystonia Medical Research
Foundation demonstrated innovativeness and achieved phenomenal impact on
behalf of the greater community. It gladdens us that we can honor the
organization nominated by Dr. Jonathan Mink. DMRF is regarded as one of the
strongest organizations providing advocacy while also engaging the
scientific community to pursue research.”
Awareness Update
Billy McLaughlin, DMRF Ambassador, continues to raise awareness about
dystonia. [http://abclocal.go.com/wls/video?id=7023468] Click here to see
his interview on ABC7.
H1N1 and You
As we enter into flu season and the H1N1 swine flu continues to make
headlines, the DMRF is receiving increasing inquiries about whether it is
safe for individuals who get botulinum toxin injections to get flu
vaccines. The answer is that it is safe to have both kinds of injected
medicines, but some simple precautions should be taken.
To learn more about flu precautions,
[http://www.dystonia-foundation.org/pages/botulinum_toxin___flu_vaccine/555.php]
click here.
Community Day 2009
Are you looking for ways to save money this holiday season? Consider
purchasing a $5
[http://www.dystonia-foundation.org/filebin/Morepdfs/Community%20Day%2009%20Flyer.pdf]
coupon book that will provide timely, cost saving coupons at Bon Ton Stores
Nationwide. All money raised from the sale of the coupon books will
support the DMRF.
Email Emma at [mailto:epinto@dystonia-foundation.org]
epinto@dystonia-foundation.org to purchase your coupon book today!
Dystonia, Stress & the Holidays
Does the holiday season stress you out? Do you want to share how you are
feeling?
[http://www.surveymonkey.com/s.aspx?sm=pJ1aT_2f0gzkRLiZvzjx_2f4JA_3d_3d]
Click here to partipate in the DMRF survey, Dystonia, Stress & the
Holidays.
Upcoming Events
10/11/09
[http://www.dystonia-foundation.org/pages/view_event/225.php?id=72] NJ Dogs
for Dystonia
10/11/09
[http://www.dystonia-foundation.org/pages/going_the_dystance_for_dystonia/564.php]
Bank of America Chicago Marathon
10/17/09
[http://www.dystonia-foundation.org/pages/view_event/225.php?id=173]
Dystonia Poker Run
10/25/09
[http://www.dystonia-foundation.org/pages/view_event/225.php?id=57] Basket
Bash
10/26/09
[http://www.dystonia-foundation.org/pages/view_event/225.php?id=87]
Dystonia Golf and Tennis Classic
10/29/09
[http://www.dystonia-foundation.org/pages/view_event/225.php?id=77] NJ
Tricky Tray
11/14/09
[http://www.dystonia-foundation.org/pages/view_event/225.php?id=48]
Community Day 2009
12/23/09
[http://www.dystonia-foundation.org/pages/view_event/225.php?id=73] Help
Find A Cure for Dystonia
Order your DMRF tshirt today!
Show your support and raise awareness. Order your DMRF tshirt today for
$20.
Sizes available:
Children's S, M, L
(available in grey & white)
Women's S, M, L and XL
(available in blue & white)
Women's XXL
(available in white only)
Men's S, M, L, XL and 2X
(available in grey & white)
Please note that women's shirts are fitted and tend to run small. If
unsure of sizing, please order an equivalent size in Men's.
To order your shirt,
[https://dystonia.securesites.net/dystonia/pages/merchandise/277.php]
click here
Tell us how we are doing. We would love to hear your thoughts about the
newsletter. Email us today at
[mailto:enewsletter@dystonia-foundation.org?subject=Feedback%20about%20eNews]
enewsletter@dystonia-foundation.org
Would you like to access the newsletter 24/7?
[http://dmrfenews.blogspot.com/] dmrfenews.blogspot.com
Would you like to receive updates by text message?
Text DYSTONIA to 90999.
Are you an iPhone
or iTouch user?
If so, check out the DMRF's new app to stay up-to-date on the latest news
from the Foundation and the dystonia community.
To get the app, visit the iTunes App store and search for "DMRF app".
Join us on one of our social networks:
[http://www.facebook.com/inbox/?ref=mb#/pages/Dystonia-Medical-Research-Foundation/46820882711]
[http://www.myspace.com/thedmrf]
[http://thedmrf.ning.com/]
[http://twitter.com/dmrf]
Contact Information
One East Wacker Drive, Suite 2810
Chicago, Illinois 60601
800.377.3978
[mailto:enewsletter@dystonia-foundation.org?subject=Questions,%20comments%20or%20concerns]
enewsletter@dystonia-foundation.org
[http://www.dystonia-foundation.org/] www.dystonia-foundation.org
© 2009 DMRF
Tuesday, October 6, 2009
Wednesday, September 2, 2009
DMRF eNews - September 2009
DMRF eNews
September 2009 - To ensure deliverability, please add
[mailto:enewsletter@dystonia-foundation.org]
enewsletter@dystonia-foundation.org to your address book.
Symposium Rewind
[http://www.youtube.com/user/cemiwire]
[http://www.youtube.com/user/cemiwire] Click on the picture to view the
video.
We're sure that all in attendance would agree that the 2009 John H. Menkes
Children and Family Dystonia Symposium was a great success! Thank you to
all in attendance who helped to make this such a special event.
A special thank you to all of the families who signed up for the Families
Fighting for a Cure Fellowship Challenge. These families joined the fight
and will be raising funds in support of a $50,000 fellowship to support
promising young investigators working in the field of dystonia.
Join the battle! Become a family fighting for a cure. No effort is too
small, every amount gets us that much closer.
For more information on how to become a fighter, email Krista, the DMRF
Manager of Special Events, at
[mailto:kanderson@dystonia-foundation.org]
kanderson@dystonia-foundation.org.
Back to school tips and tricks
It's that time of year again. Are you looking for tips and tricks on how
to prepare your child for the upcoming school year?
Drop us a line if you would be interested in receiving the presentation
slides from the very imformative Educational Rights at this year's
symposium. Look for an announcement on the DMRF website on this important
topic.
Email [mailto:enewsletter@dystonia-foundation.org]
enewsletter@dystonia-foundation.org today.
The DMRF is also pleased to announce the release of
Kids Like Me:
An Interactive Program for Children with Dystonia
This DVD is designed for children aged 8-12. The purpose is to give kids
a tool to help them better understand dystonia in a fun, engaging format.
[https://dystonia.securesites.net/dystonia/pages/videos_tapes_cd_s/274.php]
Order your FREE copy of Kids Like Me today!
Stay in touch
In today's world,we are always looking for ways to make our lives easier
while staying connected. With family and friends living in all parts of
the country and around the world, what better way to stay in touch than
through social networks.
If you have not done so already, we invite you to join us on the DMRF
social network scene. These forums provide a great way for you to stay
connected, stay in touch and stay informed.
Dystonia Website:
[http://www.dystonia-foundation.org] http://www.dystonia-foundation.org
Facebook: Keyword "dystonia friend"
Myspace: [http://www.myspace.com/thedmrf] http://www.myspace.com/thedmrf
Ning: [http://thedmrf.ning.com] http://thedmrf.ning.com
YouTube: [http://www.youtube.com/user/cemiwire]
http://www.youtube.com/user/cemiwire
Twitter: [http://twitter.com/dmrf] http://twitter.com/dmrf
Access the eNews 24 hours a day, seven days a week at
[http://dmrfenews.blogspot.com] http://dmrfenews.blogspot.com
Want to hear what's going on at the Foundation and in the dystonia
community? Visit DMRF Insights to learn more about how the Foundation is
carrying out our mission of research, awareness, education, advocacy and
support.
[http://dmrfinsights.blogspot.com] http://dmrfinsights.blogspot.com
Are you looking for an easy way to share this information with others?
[https://dystonia.securesites.net/dystonia/pages/awareness_materials/276.php]
Order the DMRF Tweets Bookmark today.
Advocacy Update
Just prior to adjourning for the August congressional recess, key
legislators in the U.S House of Representatives began debating the type of
generic biologic product approval pathway that would be included in the
House healthcare reform package.
The dystonia patient community supports the bipartisan approval pathway
that was crafted by Congresswoman Anna Eshoo (D-CA-14th) and Congressman
Joe Barton (R-TX-6th) which favors patient safety above all else, the
Pathway for Biosimilars Act (H.R. 1548). This legislation contains strict
protocols to ensure the safety of treatments and even has specific
additional standards regarding the development of dangerous biologic
products, like botulinumtoxin.
During the debate on Capitol Hill, dystonia advocates contacted their
representatives and urged them to support H.R. 1548’s inclusion in the
healthcare reform package. Thanks to the groundswell of support, H.R.
1548’s strict safety provisions were adopted after a narrow, non-partisan
vote.
While this is a meaningful victory for the dystonia patient community,
dystonia advocates will have additional work ahead of them when Congress
reconvenes in early September. More outreach and education will be needed
to advance H.R. 1548’s patient safety standards through the legislative
process and an organized push will begin to see that dystonia is added to
the list of conditions eligible for study through the Department of
Defense’s Peer-Reviewed Medical Research Program.
For additional information on the DMRF’s legislative agenda or to
identify yourself as a dystonia advocate, please
[http://www.dystonia-foundation.org/pages/become_a_dystonia_advocate/165.php]
go to the DMRF website and visit the advocacy section.
Junior Advisory Council
Are you a young person (or young at heart) who wants to become more
involved with the Foundation? Let's talk.
Send us an email at [mailto:enewsletter@dystonia-foundation.org]
enewsletter@dystonia-foundation.org.
We'd love to hear from you!
Looking for ways to help?
Are you looking for ways to help move the DMRF's mission of research,
awareness, advocacy and support forward? Consider a letter writing
campaign, a great way to engage family and friends in the work of the DMRF.
Would you like more information on how to get one started?
Email [mailto:enewsletter@dystonia-foundation.org]
enewsletter@dystonia-foundation.org for more information on how to get your
letter writing campaign started.
Become a brain donor and make a difference!
The donation of precious tissue and organs is a selfless act that can
dramatically improve the quality of life of others. In a neurological
disorder such as dystonia, brain donors are desperately needed! Brain
tissue is an extremely valuable commodity that researchers require to help
uncover important clues about this complex disorder.
We are in need of brain donors who have dystonia, as well as those who do
not have dystonia, and we encourage family members where dystonia is
present to also register as brain donors as well (even if they don’t
exhibit symptoms). The Dystonia Medical Research Foundation has partnered
with the NICHD Brain & Tissue Bank for Developmental Disorders at the
University of Maryland to make this important research possible.
There is no cost to donors or to their families, no disruption in funeral
or memorial services and brain recovery does not affect the outward
appearance of the donor.
Registering in advance as a brain donor helps to ensure that a successful
and timely recovery will take place after we are gone. This registration is
separate and apart from regular organ or tissue donation, through the state
where you live, and special consent forms must be signed with the
University of Maryland!
Please contact Martha Murphy, Brain Bank Liaison
at [mailto:brainbank@dystonia-foundation.org]
brainbank@dystonia-foundation.org or by phoning 1-800-377-DYST (3978) or
312-755-0198. We will need to postal mail you information so it is very
important that you include your full legal name, postal mailing address,
phone number(s) where you can be reached, and your e-mail address (if
applicable).
We are happy to answer any questions that you may have and help guide you
through the registration process. We greatly appreciate those of you who
are already registered brain donors…you are providing a very special gift
to the dystonia community!
Mark Your Calendars
September 19, 2009 - Dystonia Awareness Jamboree
(OK)
[http://www.dystonia-foundation.org/pages/view_event/225.php?id=166]
http://www.dystonia-foundation.org/pages/view_event/225.php?id=166
September 26, 2009 - Dystance for Dystonia (WA)
This is a great opportunity for family and friends withing the Puget Sound
area to gather for a day of dystonia awareness and fundraising. The day
will be filled with entertainment for all ages including a pirate,
balloons, raffles, goodie bags and more.
[http://www.pugetsounddystonia.com] http://www.pugetsounddystonia.com
October 3, 2009 - PLAYING WITH THE QUEEN OF HEARTS, A BENEFIT CONCERT FOR DYSTONIA (CA)
The concert will be held in San Diego, CA on Sat., 10/3/09 at 7:00 p.m.
and will star Grammy Award-winning recording artist JUICE NEWTON. Juice is
known for such timeless hits as “Angel of the Morning,” “Queen of
Hearts” and “The Sweetest Thing.” Proceeds from the concert will be
equally divided between the Dystonia Medical Research Foundation and the
National Spasmodic Dysphonia Association and directed to fund critical
dystonia research.
Tickets are $25 and $40 and available through
[http://www.showboxoffice.com] www.showboxoffice.com or by contacting
Paul Fowler at [mailto:sdvoicehelp@earthlink.net]
sdvoicehelp@earthlink.net or 858-922-8309.
October 3, 2009 - Martini Open (OH)
More information coming soon!
October 11, 2009 - NJ Dogs for Dystonia (NJ)
Join Joanna, Janice, Len and others as they host the 4th Annual Dogs for
Dystonia dog walk in NJ. The event will be held at Turkey Swamp Park,
Freehold, NJ, on Sunday, October 11, 2009, from noon to 3 PM.
[http://www.dogsfordystonia.com/] http://www.dogsfordystonia.com/
October 11, 2009 - Bank of America Chicago Marathon (IL)
Support Brian Stephenson and Julie Zaia as they run on behalf of the
Foundation during this year's marathon.
For more on Brian's story, visit
[http://dmrfaccidentalhero.blogspot.com/]
http://dmrfaccidentalhero.blogspot.com/
To support his run, visit
[http://www.rsvpbook.com/event.php?474735]
http://www.rsvpbook.com/event.php?474735
For more on Julie's story, visit
[http://juliezaia.wordpress.com/] http://juliezaia.wordpress.com/
To support her run, visit
[http://www.rsvpbook.com/event.php?407843]
http://www.rsvpbook.com/event.php?407843
October 25, 2009 - 5th Annual Basket Bash (IL)
More details to follow!
October 26, 2009 - 3rd Annual Dystonia Golf & Tennis Classic (DC)
[http://www.dystonia-foundation.org/pages/view_event/225.php?id=87]
http://www.dystonia-foundation.org/pages/view_event/225.php?id=87
October 29, 2009 - 16th Annual NJ Tricky Tray (NJ)
[http://www.dystonia-foundation.org/pages/view_event/225.php?id=77]
http://www.dystonia-foundation.org/pages/view_event/225.php?id=77
November 14, 2009 - Carson's Community Day (Nationwide)
Email Emma at [mailto:epinto@dystonia-foundation.org]
epinto@dystonia-foundation.org for more information.
December 23, 2009 - 6th Annual Help Find A Cure for Dystonia (PA)
[http://www.dystonia-foundation.org/pages/view_event/225.php?id=73]
http://www.dystonia-foundation.org/pages/view_event/225.php?id=73
Quick and easy fundraising idea
Do you shop online? Are you looking for an easy way to support the
efforts of the DMRF? iGive might be just the program for you! With over
700 brand name stores, a portion of your online purchases can be donated to
the Foundation.
Click here for more information and to sign up:
[http://www.igive.com/welcome/warmwelcome.cfm?c=1413]
http://www.igive.com/welcome/warmwelcome.cfm?c=1413
Happy Labor Day!
Order your DMRF tshirt today!
Show your support and raise awareness. Order your DMRF tshirt today for
$20.
Sizes available:
Children's S, M, L
(available in grey & white)
Women's S, M, L and XL
(available in blue & white)
Women's XXL
(available in white only)
Men's S, M, L, XL and 2X
(available in grey & white)
Please note that women's shirts are fitted and tend to run small. If
unsure of sizing, please order an equivalent size in Men's.
To order your shirt,
[https://dystonia.securesites.net/dystonia/pages/merchandise/277.php]
click here
Tell us how we are doing. We would love to hear your thoughts about the
newsletter. Email us today at
[mailto:enewsletter@dystonia-foundation.org?subject=Feedback%20about%20eNews]
enewsletter@dystonia-foundation.org
Would you like to access the newsletter 24/7?
[http://dmrfenews.blogspot.com/] dmrfenews.blogspot.com
Would you like to receive updates by text message?
Text DYSTONIA to 90999.
Are you an iPhone
or iTouch user?
If so, check out the DMRF's new app to stay up-to-date on the latest news
from the Foundation and the dystonia community.
To get the app, visit the iTunes App store and search for "DMRF app".
Join us on one of our social networks:
[http://www.facebook.com/inbox/?ref=mb#/pages/Dystonia-Medical-Research-Foundation/46820882711]
[http://www.myspace.com/thedmrf]
[http://thedmrf.ning.com/]
[http://twitter.com/dmrf]
Contact Information
One East Wacker Drive, Suite 2810
Chicago, Illinois 60601
800.377.3978
[mailto:enewsletter@dystonia-foundation.org?subject=Questions,%20comments%20or%20concerns]
enewsletter@dystonia-foundation.org
[http://www.dystonia-foundation.org/] www.dystonia-foundation.org
© 2009 DMRF
September 2009 - To ensure deliverability, please add
[mailto:enewsletter@dystonia-foundation.org]
enewsletter@dystonia-foundation.org to your address book.
Symposium Rewind
[http://www.youtube.com/user/cemiwire]
[http://www.youtube.com/user/cemiwire] Click on the picture to view the
video.
We're sure that all in attendance would agree that the 2009 John H. Menkes
Children and Family Dystonia Symposium was a great success! Thank you to
all in attendance who helped to make this such a special event.
A special thank you to all of the families who signed up for the Families
Fighting for a Cure Fellowship Challenge. These families joined the fight
and will be raising funds in support of a $50,000 fellowship to support
promising young investigators working in the field of dystonia.
Join the battle! Become a family fighting for a cure. No effort is too
small, every amount gets us that much closer.
For more information on how to become a fighter, email Krista, the DMRF
Manager of Special Events, at
[mailto:kanderson@dystonia-foundation.org]
kanderson@dystonia-foundation.org.
Back to school tips and tricks
It's that time of year again. Are you looking for tips and tricks on how
to prepare your child for the upcoming school year?
Drop us a line if you would be interested in receiving the presentation
slides from the very imformative Educational Rights at this year's
symposium. Look for an announcement on the DMRF website on this important
topic.
Email [mailto:enewsletter@dystonia-foundation.org]
enewsletter@dystonia-foundation.org today.
The DMRF is also pleased to announce the release of
Kids Like Me:
An Interactive Program for Children with Dystonia
This DVD is designed for children aged 8-12. The purpose is to give kids
a tool to help them better understand dystonia in a fun, engaging format.
[https://dystonia.securesites.net/dystonia/pages/videos_tapes_cd_s/274.php]
Order your FREE copy of Kids Like Me today!
Stay in touch
In today's world,we are always looking for ways to make our lives easier
while staying connected. With family and friends living in all parts of
the country and around the world, what better way to stay in touch than
through social networks.
If you have not done so already, we invite you to join us on the DMRF
social network scene. These forums provide a great way for you to stay
connected, stay in touch and stay informed.
Dystonia Website:
[http://www.dystonia-foundation.org] http://www.dystonia-foundation.org
Facebook: Keyword "dystonia friend"
Myspace: [http://www.myspace.com/thedmrf] http://www.myspace.com/thedmrf
Ning: [http://thedmrf.ning.com] http://thedmrf.ning.com
YouTube: [http://www.youtube.com/user/cemiwire]
http://www.youtube.com/user/cemiwire
Twitter: [http://twitter.com/dmrf] http://twitter.com/dmrf
Access the eNews 24 hours a day, seven days a week at
[http://dmrfenews.blogspot.com] http://dmrfenews.blogspot.com
Want to hear what's going on at the Foundation and in the dystonia
community? Visit DMRF Insights to learn more about how the Foundation is
carrying out our mission of research, awareness, education, advocacy and
support.
[http://dmrfinsights.blogspot.com] http://dmrfinsights.blogspot.com
Are you looking for an easy way to share this information with others?
[https://dystonia.securesites.net/dystonia/pages/awareness_materials/276.php]
Order the DMRF Tweets Bookmark today.
Advocacy Update
Just prior to adjourning for the August congressional recess, key
legislators in the U.S House of Representatives began debating the type of
generic biologic product approval pathway that would be included in the
House healthcare reform package.
The dystonia patient community supports the bipartisan approval pathway
that was crafted by Congresswoman Anna Eshoo (D-CA-14th) and Congressman
Joe Barton (R-TX-6th) which favors patient safety above all else, the
Pathway for Biosimilars Act (H.R. 1548). This legislation contains strict
protocols to ensure the safety of treatments and even has specific
additional standards regarding the development of dangerous biologic
products, like botulinumtoxin.
During the debate on Capitol Hill, dystonia advocates contacted their
representatives and urged them to support H.R. 1548’s inclusion in the
healthcare reform package. Thanks to the groundswell of support, H.R.
1548’s strict safety provisions were adopted after a narrow, non-partisan
vote.
While this is a meaningful victory for the dystonia patient community,
dystonia advocates will have additional work ahead of them when Congress
reconvenes in early September. More outreach and education will be needed
to advance H.R. 1548’s patient safety standards through the legislative
process and an organized push will begin to see that dystonia is added to
the list of conditions eligible for study through the Department of
Defense’s Peer-Reviewed Medical Research Program.
For additional information on the DMRF’s legislative agenda or to
identify yourself as a dystonia advocate, please
[http://www.dystonia-foundation.org/pages/become_a_dystonia_advocate/165.php]
go to the DMRF website and visit the advocacy section.
Junior Advisory Council
Are you a young person (or young at heart) who wants to become more
involved with the Foundation? Let's talk.
Send us an email at [mailto:enewsletter@dystonia-foundation.org]
enewsletter@dystonia-foundation.org.
We'd love to hear from you!
Looking for ways to help?
Are you looking for ways to help move the DMRF's mission of research,
awareness, advocacy and support forward? Consider a letter writing
campaign, a great way to engage family and friends in the work of the DMRF.
Would you like more information on how to get one started?
Email [mailto:enewsletter@dystonia-foundation.org]
enewsletter@dystonia-foundation.org for more information on how to get your
letter writing campaign started.
Become a brain donor and make a difference!
The donation of precious tissue and organs is a selfless act that can
dramatically improve the quality of life of others. In a neurological
disorder such as dystonia, brain donors are desperately needed! Brain
tissue is an extremely valuable commodity that researchers require to help
uncover important clues about this complex disorder.
We are in need of brain donors who have dystonia, as well as those who do
not have dystonia, and we encourage family members where dystonia is
present to also register as brain donors as well (even if they don’t
exhibit symptoms). The Dystonia Medical Research Foundation has partnered
with the NICHD Brain & Tissue Bank for Developmental Disorders at the
University of Maryland to make this important research possible.
There is no cost to donors or to their families, no disruption in funeral
or memorial services and brain recovery does not affect the outward
appearance of the donor.
Registering in advance as a brain donor helps to ensure that a successful
and timely recovery will take place after we are gone. This registration is
separate and apart from regular organ or tissue donation, through the state
where you live, and special consent forms must be signed with the
University of Maryland!
Please contact Martha Murphy, Brain Bank Liaison
at [mailto:brainbank@dystonia-foundation.org]
brainbank@dystonia-foundation.org or by phoning 1-800-377-DYST (3978) or
312-755-0198. We will need to postal mail you information so it is very
important that you include your full legal name, postal mailing address,
phone number(s) where you can be reached, and your e-mail address (if
applicable).
We are happy to answer any questions that you may have and help guide you
through the registration process. We greatly appreciate those of you who
are already registered brain donors…you are providing a very special gift
to the dystonia community!
Mark Your Calendars
September 19, 2009 - Dystonia Awareness Jamboree
(OK)
[http://www.dystonia-foundation.org/pages/view_event/225.php?id=166]
http://www.dystonia-foundation.org/pages/view_event/225.php?id=166
September 26, 2009 - Dystance for Dystonia (WA)
This is a great opportunity for family and friends withing the Puget Sound
area to gather for a day of dystonia awareness and fundraising. The day
will be filled with entertainment for all ages including a pirate,
balloons, raffles, goodie bags and more.
[http://www.pugetsounddystonia.com] http://www.pugetsounddystonia.com
October 3, 2009 - PLAYING WITH THE QUEEN OF HEARTS, A BENEFIT CONCERT FOR DYSTONIA (CA)
The concert will be held in San Diego, CA on Sat., 10/3/09 at 7:00 p.m.
and will star Grammy Award-winning recording artist JUICE NEWTON. Juice is
known for such timeless hits as “Angel of the Morning,” “Queen of
Hearts” and “The Sweetest Thing.” Proceeds from the concert will be
equally divided between the Dystonia Medical Research Foundation and the
National Spasmodic Dysphonia Association and directed to fund critical
dystonia research.
Tickets are $25 and $40 and available through
[http://www.showboxoffice.com] www.showboxoffice.com or by contacting
Paul Fowler at [mailto:sdvoicehelp@earthlink.net]
sdvoicehelp@earthlink.net or 858-922-8309.
October 3, 2009 - Martini Open (OH)
More information coming soon!
October 11, 2009 - NJ Dogs for Dystonia (NJ)
Join Joanna, Janice, Len and others as they host the 4th Annual Dogs for
Dystonia dog walk in NJ. The event will be held at Turkey Swamp Park,
Freehold, NJ, on Sunday, October 11, 2009, from noon to 3 PM.
[http://www.dogsfordystonia.com/] http://www.dogsfordystonia.com/
October 11, 2009 - Bank of America Chicago Marathon (IL)
Support Brian Stephenson and Julie Zaia as they run on behalf of the
Foundation during this year's marathon.
For more on Brian's story, visit
[http://dmrfaccidentalhero.blogspot.com/]
http://dmrfaccidentalhero.blogspot.com/
To support his run, visit
[http://www.rsvpbook.com/event.php?474735]
http://www.rsvpbook.com/event.php?474735
For more on Julie's story, visit
[http://juliezaia.wordpress.com/] http://juliezaia.wordpress.com/
To support her run, visit
[http://www.rsvpbook.com/event.php?407843]
http://www.rsvpbook.com/event.php?407843
October 25, 2009 - 5th Annual Basket Bash (IL)
More details to follow!
October 26, 2009 - 3rd Annual Dystonia Golf & Tennis Classic (DC)
[http://www.dystonia-foundation.org/pages/view_event/225.php?id=87]
http://www.dystonia-foundation.org/pages/view_event/225.php?id=87
October 29, 2009 - 16th Annual NJ Tricky Tray (NJ)
[http://www.dystonia-foundation.org/pages/view_event/225.php?id=77]
http://www.dystonia-foundation.org/pages/view_event/225.php?id=77
November 14, 2009 - Carson's Community Day (Nationwide)
Email Emma at [mailto:epinto@dystonia-foundation.org]
epinto@dystonia-foundation.org for more information.
December 23, 2009 - 6th Annual Help Find A Cure for Dystonia (PA)
[http://www.dystonia-foundation.org/pages/view_event/225.php?id=73]
http://www.dystonia-foundation.org/pages/view_event/225.php?id=73
Quick and easy fundraising idea
Do you shop online? Are you looking for an easy way to support the
efforts of the DMRF? iGive might be just the program for you! With over
700 brand name stores, a portion of your online purchases can be donated to
the Foundation.
Click here for more information and to sign up:
[http://www.igive.com/welcome/warmwelcome.cfm?c=1413]
http://www.igive.com/welcome/warmwelcome.cfm?c=1413
Happy Labor Day!
Order your DMRF tshirt today!
Show your support and raise awareness. Order your DMRF tshirt today for
$20.
Sizes available:
Children's S, M, L
(available in grey & white)
Women's S, M, L and XL
(available in blue & white)
Women's XXL
(available in white only)
Men's S, M, L, XL and 2X
(available in grey & white)
Please note that women's shirts are fitted and tend to run small. If
unsure of sizing, please order an equivalent size in Men's.
To order your shirt,
[https://dystonia.securesites.net/dystonia/pages/merchandise/277.php]
click here
Tell us how we are doing. We would love to hear your thoughts about the
newsletter. Email us today at
[mailto:enewsletter@dystonia-foundation.org?subject=Feedback%20about%20eNews]
enewsletter@dystonia-foundation.org
Would you like to access the newsletter 24/7?
[http://dmrfenews.blogspot.com/] dmrfenews.blogspot.com
Would you like to receive updates by text message?
Text DYSTONIA to 90999.
Are you an iPhone
or iTouch user?
If so, check out the DMRF's new app to stay up-to-date on the latest news
from the Foundation and the dystonia community.
To get the app, visit the iTunes App store and search for "DMRF app".
Join us on one of our social networks:
[http://www.facebook.com/inbox/?ref=mb#/pages/Dystonia-Medical-Research-Foundation/46820882711]
[http://www.myspace.com/thedmrf]
[http://thedmrf.ning.com/]
[http://twitter.com/dmrf]
Contact Information
One East Wacker Drive, Suite 2810
Chicago, Illinois 60601
800.377.3978
[mailto:enewsletter@dystonia-foundation.org?subject=Questions,%20comments%20or%20concerns]
enewsletter@dystonia-foundation.org
[http://www.dystonia-foundation.org/] www.dystonia-foundation.org
© 2009 DMRF
Thursday, August 6, 2009
DMRF eNews - August 2009
DMRF eNews
August 2009 -To ensure deliverability, please add
enewsletter@dystonia-foundation.org to your address book.
There is still time!
John H. Menkes
Children & Family Dystonia Symposium
August 14-16, 2009 – Chicago, Illinois
Where your kids can just be kids…
Where your questions will be answered…
Where everyone understands what it’s like to raise a child with
dystonia.
This year, we are particularly proud that this great event has been named
in memory and in honor of John H. Menkes, MD, founding Scientific Director
of the DMRF. Dr. Menkes was a pediatric neurologist who understood the
importance of not only working with the child, but also working with the
family. This symposium helps children affected by dystonia and their
families develop networks of friends who understand completely what it is
like to live with dystonia. These networks are a treasured, constant
source of support creating ties that will last a lifetime.
[http://www.dystonia-foundation.org/pages/5th_children___family_symposium/543.php]
Click here to learn more!
For more information about the symposium, contact 312-755-0198.
Back to school tips and tricks
It's that time of year again. Are you looking for tips and tricks on how
to prepare your child for the upcoming school year? If so, stay tuned for
the September issue of the DMRF eNews.
Dystonia Twitter Awareness Day
On July 22nd, @DMRF tweeted about #dystonia as did many others. Our
goal? To raise awareness and become a Twitter trend...
...AND WE DID IT!
Thank you to everyone who participated that day. Together, we made a
remarkable impact on the Twitter community. Together, we made a
difference.
If you have not already done so, consider tweeting about #dystonia. By
including the "#" sign, you are making it easier for people to follow the
conversation.
Follow @dmrf for information, updates, news and events.
Special note: The DMRF will have a Twitter correspondent at the John H.
Menkes Children & Family Symposium. Stay tuned to @dmrf on August 14-16 to
stay abreast of the happenings.
Welcome to the Oregon Dystonia Support Group
Are you living with dystonia and feel like you are the only one? Consider
coming out to join the first meeting of the Oregon Dystonia Support Group.
Saturday, August 29, 2009 at 1pm
St. Helen's Hall, Episcopal Church
Downtown Bend
(next door to Trinity on Wall Street)
231 NW Idaho Avenue
Bend, OR
This will be a meet & greet/care & share get together. Questions?
Contact Pat Croll at 541.388.2577
Don't live in Oregon, but want to be part of a support group in your area?
Visit
[http://www.dystonia-foundation.org/pages/find_a_support_group/233.php]
http://www.dystonia-foundation.org/pages/find_a_support_group/233.php for
more information.
See how the New Jersey Chapter is helping to move our mission forward
The New Jersey Chapter has been a great champion of the DMRF and the
dystonia community. For the past 14 years, the Chapter has held their
annual fundraising event, the Tricky Tray Dinner, a great evening full of
friends and fun.
This year's dinner is on Thursday, October 29th at the Westmount Country
Club in Woodland Park, New Jersey. The doors open at 6pm and tickets are
$45.
For more information,
please call Judy Bozza at 201.943.8036.
Looking for ways to help?
Are you looking for ways to help move the DMRF's mission of research,
awareness, advocacy and support forward? Consider hosting a fundraising
event in your community.
Would you like more information on how to get one started? Email Krista
at [mailto:kanderson@dystonia-foundation.org]
kanderson@dystonia-foundation.org.
A unique opportunity
Most of us take our brains for granted but they are extremely complex
organs that make it possible for us to navigate through every aspect of our
daily lives. Our brains can also play an incredibly valuable role when we
are gone. By studying brain tissue, dystonia researchers are provided with
a unique opportunity to learn more about our disorder and what goes awry in
this intricate structure that causes the involuntary movements and muscle
spasms to occur.
RESEARCHERS NEED YOUR HELP!! Please contact us now to find out what is
involved in becoming a registered brain donor. Important: Just because you
have indicated on your driver’s license that you wish to donate your
organs and tissue upon death, that does NOT mean that you are automatically
registered as a brain donor and that your brain will go to dystonia
research. There is a separate process and forms need to be completed
through the NICHD Brain & Tissue Bank for Developmental Disorders at the
University of Maryland. The Dystonia Medical Research Foundation partners
with their facility and we will provide you with information about how the
program works and help you with the registration process.
To learn more, please provide us with your FULL NAME, POSTAL MAILING
ADDRESS, PHONE NUMBER AND E-MAIL ADDRESS (if applicable) and e-mail us at
[mailto:brainbank@dystonia-foundation.org]
brainbank@dystonia-foundation.org or phone 800.377.3978 so that we can
provide you with the necessary information. Your selfless contribution
means so much to so many!
Juice Newton Benefit Concert
GRAMMY AWARD-WINNING RECORDING ARTIST JUICE NEWTON PERFORMS FOR OUR CAUSE
ONCE AGAIN! On SATURDAY, OCTOBER 3 at 7:00 p.m. JUICE NEWTON known for
such hits as “Angel of the Morning” and “Queen of Hearts” will take
the stage for the second time at the beautiful Joan Kroc Theatre in San
Diego, CA to help raise awareness about dystonia and also crucial funds for
dystonia research.
This is a fundraising event for the Dystonia Support & Advocacy Group of
San Diego County. If you live anywhere in Southern California, or even
farther away, consider planning a trip to San Diego to enjoy this wonderful
evening of entertainment and inspiration, and all that the city has to
offer.
Tickets are reasonably priced at $25 and $40 and can be purchased online
through a secure website at [http://www.showboxoffice.com/]
www.showboxoffice.com or by contacting Paul Fowler at
[mailto:sdvoicehelp@earthlink.net] sdvoicehelp@earthlink.net All seats in
the 600-seat theatre are very good and there are special seating
accommodations for those with mobility issues. Please contact Paul to make
arrangements for special seating. To see the theatre go to
[http://kroccenter.org/theatre] http://kroccenter.org/theatre
If you absolutely cannot attend the concert, please consider making a
charitable donation through Dystonia of San Diego to support dystonia
research. Please contact the group’s leader, Martha Murphy at
[mailto:tmmurphy@juno.com] tmmurphy@juno.com for more details on how to
make a donation. Receipts will be issued for donations and proceeds from
this event will be evenly divided between the Dystonia Medical Research
Foundation and the National Spasmodic Dysphonia Association and directed to
dystonia research. To learn more about Juice Newton please visit
[http://www.juicenewton.com/] www.juicenewton.com and
[http://www.juicenewtonfanclub.com/] www.juicenewtonfanclub.com To learn
more about the San Diego support group, visit
[http://www.dystoniaofsandiego.com/] www.dystoniaofsandiego.com
Quick and easy fundraising idea
Do you shop online? Are you looking for an easy way to support the
efforts of the DMRF? iGive might be just the program for you! With over
700 brand name stores, a portion of your online purchases can be donated to
the Foundation.
Click here for more information and to sign up:
[http://www.igive.com/welcome/warmwelcome.cfm?c=1413 ]
http://www.igive.com/welcome/warmwelcome.cfm?c=1413
Mark Your Calendars
August 10, 2009 - Dine Out for Dystonia (NJ) - Tortilla Press,
Collingswood, NJ
[http://www.dystonia-foundation.org/pages/view_event/225.php?id=168]
http://www.dystonia-foundation.org/pages/view_event/225.php?id=168
August 17, 2009 - 1st Annual Minnesota Golf Tournament (MN) - Gopher Hills
Golf Club
Come see Minnesota native and musician and DMRF Ambassador, Billy
McLaughlin (can you link to his website), perform following the first
annual MN Golf Classic.
For over twenty years, McLaughlin performed his intricate guitar
compositions for audiences around the world. His career was derailed when
he developed dystonia in his right hand. After doctors confirmed no current
treatments could fully restore the use of his hand, he took the
extraordinary step of relearning his music left handed.
The Golf Classic and Concert will be hosted at Gopher Hills Golf Course,
Cannon Falls, MN.
For more information and tickets, contact
[mailto:kanderson@dystonia-foundation.org]
kanderson@dystonia-foundation.org or register at
[http://www.rsvpbook.com/event.php?437524]
http://www.rsvpbook.com/event.php?437524.
August 22, 2009 - Changing Keys showing (CA) - Center for Spiritual Living
[http://www.changing-keys.com/node/26]
http://www.changing-keys.com/node/26
September 19, 2009 - Dystonia Awareness Jamboree (OK)
[http://www.dystonia-foundation.org/pages/view_event/225.php?id=166]
http://www.dystonia-foundation.org/pages/view_event/225.php?id=166
October 3, 2009 - Martini Open (OH)
More information coming soon!
October 11, 2009 - NJ Dogs for Dystonia (NJ)
[http://www.dystonia-foundation.org/pages/view_event/225.php?id=72]
http://www.dystonia-foundation.org/pages/view_event/225.php?id=72
October 25, 2009 - 5th Annual Basket Bash (IL)
More information coming soon!
October 29, 2009 - Tricky Tray (NJ)
More information coming soon!
Order your DMRF tshirt today!
Show your support and raise awareness. Order your DMRF tshirt today for
$20.
Sizes available:
Children's S, M, L
(available in grey & white)
Women's S, M, L and XL
(available in blue & white)
Women's XXL
(available in white only)
Men's S, M, L, XL and 2X
(available in grey & white)
Please note that women's shirts are fitted and tend to run small. If
unsure of sizing, please order an equivalent size in Men's.
To order your shirt,
[https://dystonia.securesites.net/dystonia/pages/merchandise/277.php]
click here
Tell us how we are doing. We would love to hear your thoughts about the
newsletter. Email us today at
[mailto:enewsletter@dystonia-foundation.org?subject=Feedback%20about%20eNews]
enewsletter@dystonia-foundation.org
Would you like to access the newsletter 24/7?
[http://dmrfenews.blogspot.com] dmrfenews.blogspot.com
Would you like to receive updates by text message?
Text DYSTONIA to 90999.
Are you an iPhone
or iTouch user?
If so, check out the DMRF's new app to stay up-to-date on the latest news
from the Foundation and the dystonia community.
To get the app, visit the iTunes App store and search for "DMRF app".
Join us on one of our social networks:
[http://www.facebook.com/inbox/?ref=mb#/pages/Dystonia-Medical-Research-Foundation/46820882711]
[http://www.myspace.com/thedmrf]
[http://thedmrf.ning.com/]
[http://twitter.com/dmrf]
Contact Information
One East Wacker Drive, Suite 2810
Chicago, Illinois 60601
800.377.3978
[mailto:enewsletter@dystonia-foundation.org?subject=Questions,%20comments%20or%20concerns]
enewsletter@dystonia-foundation.org
[http://www.dystonia-foundation.org] www.dystonia-foundation.org
© 2009 DMRF
August 2009 -To ensure deliverability, please add
enewsletter@dystonia-foundation.org to your address book.
There is still time!
John H. Menkes
Children & Family Dystonia Symposium
August 14-16, 2009 – Chicago, Illinois
Where your kids can just be kids…
Where your questions will be answered…
Where everyone understands what it’s like to raise a child with
dystonia.
This year, we are particularly proud that this great event has been named
in memory and in honor of John H. Menkes, MD, founding Scientific Director
of the DMRF. Dr. Menkes was a pediatric neurologist who understood the
importance of not only working with the child, but also working with the
family. This symposium helps children affected by dystonia and their
families develop networks of friends who understand completely what it is
like to live with dystonia. These networks are a treasured, constant
source of support creating ties that will last a lifetime.
[http://www.dystonia-foundation.org/pages/5th_children___family_symposium/543.php]
Click here to learn more!
For more information about the symposium, contact 312-755-0198.
Back to school tips and tricks
It's that time of year again. Are you looking for tips and tricks on how
to prepare your child for the upcoming school year? If so, stay tuned for
the September issue of the DMRF eNews.
Dystonia Twitter Awareness Day
On July 22nd, @DMRF tweeted about #dystonia as did many others. Our
goal? To raise awareness and become a Twitter trend...
...AND WE DID IT!
Thank you to everyone who participated that day. Together, we made a
remarkable impact on the Twitter community. Together, we made a
difference.
If you have not already done so, consider tweeting about #dystonia. By
including the "#" sign, you are making it easier for people to follow the
conversation.
Follow @dmrf for information, updates, news and events.
Special note: The DMRF will have a Twitter correspondent at the John H.
Menkes Children & Family Symposium. Stay tuned to @dmrf on August 14-16 to
stay abreast of the happenings.
Welcome to the Oregon Dystonia Support Group
Are you living with dystonia and feel like you are the only one? Consider
coming out to join the first meeting of the Oregon Dystonia Support Group.
Saturday, August 29, 2009 at 1pm
St. Helen's Hall, Episcopal Church
Downtown Bend
(next door to Trinity on Wall Street)
231 NW Idaho Avenue
Bend, OR
This will be a meet & greet/care & share get together. Questions?
Contact Pat Croll at 541.388.2577
Don't live in Oregon, but want to be part of a support group in your area?
Visit
[http://www.dystonia-foundation.org/pages/find_a_support_group/233.php]
http://www.dystonia-foundation.org/pages/find_a_support_group/233.php for
more information.
See how the New Jersey Chapter is helping to move our mission forward
The New Jersey Chapter has been a great champion of the DMRF and the
dystonia community. For the past 14 years, the Chapter has held their
annual fundraising event, the Tricky Tray Dinner, a great evening full of
friends and fun.
This year's dinner is on Thursday, October 29th at the Westmount Country
Club in Woodland Park, New Jersey. The doors open at 6pm and tickets are
$45.
For more information,
please call Judy Bozza at 201.943.8036.
Looking for ways to help?
Are you looking for ways to help move the DMRF's mission of research,
awareness, advocacy and support forward? Consider hosting a fundraising
event in your community.
Would you like more information on how to get one started? Email Krista
at [mailto:kanderson@dystonia-foundation.org]
kanderson@dystonia-foundation.org.
A unique opportunity
Most of us take our brains for granted but they are extremely complex
organs that make it possible for us to navigate through every aspect of our
daily lives. Our brains can also play an incredibly valuable role when we
are gone. By studying brain tissue, dystonia researchers are provided with
a unique opportunity to learn more about our disorder and what goes awry in
this intricate structure that causes the involuntary movements and muscle
spasms to occur.
RESEARCHERS NEED YOUR HELP!! Please contact us now to find out what is
involved in becoming a registered brain donor. Important: Just because you
have indicated on your driver’s license that you wish to donate your
organs and tissue upon death, that does NOT mean that you are automatically
registered as a brain donor and that your brain will go to dystonia
research. There is a separate process and forms need to be completed
through the NICHD Brain & Tissue Bank for Developmental Disorders at the
University of Maryland. The Dystonia Medical Research Foundation partners
with their facility and we will provide you with information about how the
program works and help you with the registration process.
To learn more, please provide us with your FULL NAME, POSTAL MAILING
ADDRESS, PHONE NUMBER AND E-MAIL ADDRESS (if applicable) and e-mail us at
[mailto:brainbank@dystonia-foundation.org]
brainbank@dystonia-foundation.org or phone 800.377.3978 so that we can
provide you with the necessary information. Your selfless contribution
means so much to so many!
Juice Newton Benefit Concert
GRAMMY AWARD-WINNING RECORDING ARTIST JUICE NEWTON PERFORMS FOR OUR CAUSE
ONCE AGAIN! On SATURDAY, OCTOBER 3 at 7:00 p.m. JUICE NEWTON known for
such hits as “Angel of the Morning” and “Queen of Hearts” will take
the stage for the second time at the beautiful Joan Kroc Theatre in San
Diego, CA to help raise awareness about dystonia and also crucial funds for
dystonia research.
This is a fundraising event for the Dystonia Support & Advocacy Group of
San Diego County. If you live anywhere in Southern California, or even
farther away, consider planning a trip to San Diego to enjoy this wonderful
evening of entertainment and inspiration, and all that the city has to
offer.
Tickets are reasonably priced at $25 and $40 and can be purchased online
through a secure website at [http://www.showboxoffice.com/]
www.showboxoffice.com or by contacting Paul Fowler at
[mailto:sdvoicehelp@earthlink.net] sdvoicehelp@earthlink.net All seats in
the 600-seat theatre are very good and there are special seating
accommodations for those with mobility issues. Please contact Paul to make
arrangements for special seating. To see the theatre go to
[http://kroccenter.org/theatre] http://kroccenter.org/theatre
If you absolutely cannot attend the concert, please consider making a
charitable donation through Dystonia of San Diego to support dystonia
research. Please contact the group’s leader, Martha Murphy at
[mailto:tmmurphy@juno.com] tmmurphy@juno.com for more details on how to
make a donation. Receipts will be issued for donations and proceeds from
this event will be evenly divided between the Dystonia Medical Research
Foundation and the National Spasmodic Dysphonia Association and directed to
dystonia research. To learn more about Juice Newton please visit
[http://www.juicenewton.com/] www.juicenewton.com and
[http://www.juicenewtonfanclub.com/] www.juicenewtonfanclub.com To learn
more about the San Diego support group, visit
[http://www.dystoniaofsandiego.com/] www.dystoniaofsandiego.com
Quick and easy fundraising idea
Do you shop online? Are you looking for an easy way to support the
efforts of the DMRF? iGive might be just the program for you! With over
700 brand name stores, a portion of your online purchases can be donated to
the Foundation.
Click here for more information and to sign up:
[http://www.igive.com/welcome/warmwelcome.cfm?c=1413 ]
http://www.igive.com/welcome/warmwelcome.cfm?c=1413
Mark Your Calendars
August 10, 2009 - Dine Out for Dystonia (NJ) - Tortilla Press,
Collingswood, NJ
[http://www.dystonia-foundation.org/pages/view_event/225.php?id=168]
http://www.dystonia-foundation.org/pages/view_event/225.php?id=168
August 17, 2009 - 1st Annual Minnesota Golf Tournament (MN) - Gopher Hills
Golf Club
Come see Minnesota native and musician and DMRF Ambassador, Billy
McLaughlin (can you link to his website), perform following the first
annual MN Golf Classic.
For over twenty years, McLaughlin performed his intricate guitar
compositions for audiences around the world. His career was derailed when
he developed dystonia in his right hand. After doctors confirmed no current
treatments could fully restore the use of his hand, he took the
extraordinary step of relearning his music left handed.
The Golf Classic and Concert will be hosted at Gopher Hills Golf Course,
Cannon Falls, MN.
For more information and tickets, contact
[mailto:kanderson@dystonia-foundation.org]
kanderson@dystonia-foundation.org or register at
[http://www.rsvpbook.com/event.php?437524]
http://www.rsvpbook.com/event.php?437524.
August 22, 2009 - Changing Keys showing (CA) - Center for Spiritual Living
[http://www.changing-keys.com/node/26]
http://www.changing-keys.com/node/26
September 19, 2009 - Dystonia Awareness Jamboree (OK)
[http://www.dystonia-foundation.org/pages/view_event/225.php?id=166]
http://www.dystonia-foundation.org/pages/view_event/225.php?id=166
October 3, 2009 - Martini Open (OH)
More information coming soon!
October 11, 2009 - NJ Dogs for Dystonia (NJ)
[http://www.dystonia-foundation.org/pages/view_event/225.php?id=72]
http://www.dystonia-foundation.org/pages/view_event/225.php?id=72
October 25, 2009 - 5th Annual Basket Bash (IL)
More information coming soon!
October 29, 2009 - Tricky Tray (NJ)
More information coming soon!
Order your DMRF tshirt today!
Show your support and raise awareness. Order your DMRF tshirt today for
$20.
Sizes available:
Children's S, M, L
(available in grey & white)
Women's S, M, L and XL
(available in blue & white)
Women's XXL
(available in white only)
Men's S, M, L, XL and 2X
(available in grey & white)
Please note that women's shirts are fitted and tend to run small. If
unsure of sizing, please order an equivalent size in Men's.
To order your shirt,
[https://dystonia.securesites.net/dystonia/pages/merchandise/277.php]
click here
Tell us how we are doing. We would love to hear your thoughts about the
newsletter. Email us today at
[mailto:enewsletter@dystonia-foundation.org?subject=Feedback%20about%20eNews]
enewsletter@dystonia-foundation.org
Would you like to access the newsletter 24/7?
[http://dmrfenews.blogspot.com] dmrfenews.blogspot.com
Would you like to receive updates by text message?
Text DYSTONIA to 90999.
Are you an iPhone
or iTouch user?
If so, check out the DMRF's new app to stay up-to-date on the latest news
from the Foundation and the dystonia community.
To get the app, visit the iTunes App store and search for "DMRF app".
Join us on one of our social networks:
[http://www.facebook.com/inbox/?ref=mb#/pages/Dystonia-Medical-Research-Foundation/46820882711]
[http://www.myspace.com/thedmrf]
[http://thedmrf.ning.com/]
[http://twitter.com/dmrf]
Contact Information
One East Wacker Drive, Suite 2810
Chicago, Illinois 60601
800.377.3978
[mailto:enewsletter@dystonia-foundation.org?subject=Questions,%20comments%20or%20concerns]
enewsletter@dystonia-foundation.org
[http://www.dystonia-foundation.org] www.dystonia-foundation.org
© 2009 DMRF
Wednesday, July 1, 2009
DMRF eNews - July 2009
DMRF eNews
July 2009 -To ensure deliverability, please add
enewsletter@dystonia-foundation.org to your address book.
Families share your stories
John H. Menkes
Children & Family Dystonia Symposium
August 14-16, 2009 – Chicago, Illinois
Where your kids can just be kids…
Where your questions will be answered…
Where everyone understands what it’s like to raise a child with
dystonia.
Join us for a special meeting for affected children, teens, and their
families. This is a great time to come together to share and learn from the
experts and one another. This year, we are particularly pleased to
announce that this great event has been named in memory and honor of John
H. Menkes, MD, founding Scientific Director of the DMRF.
[http://www.dystonia-foundation.org/pages/5th_children___family_symposium/543.php]
Click here to learn more!
A limited number of scholarships to assist with the cost of attending the
symposium are available. For more information, contact 312-755-0198.
Please note: The DMRF has negotiated a special hotel rate of $159 per
night for a limited number of rooms for Symposium attendees. To take
advantage of the special rate, book early, no later than July 20th.
Keep the stories coming...
The DMRF received an outporing of emails from many of you during Dystonia
Awareness Week and the month of June. Thank you to everyone who has shared
their dystonia experiences to raise awareness. Your voices, your stories
not only shed light on dystonia but also often provide comfort to others
experiencing the same. Let's keep the momentum going, continuing on with
our combined efforts to make a difference.
Join us at [http://thedmrf.ning.com ] http://thedmrf.ning.com to share
your story or respond to others. Your one act may change another's life
for the good.
So act now!
[http://thedmrf.ning.com] http://thedmrf.ning.com
One person making a difference...
We are pleased to announce that Interstate Hotels & Resorts, the world
leader in hotel management, has taken DMRF on as a charitable partner
through their Interstate Gives Back (IGB) program. One of Interstate
Hotels & Resorts’ seven core values is Community Service, which is
carried out company-wide at two corporate offices in Arlington, Virginia
and Irving, Texas, and in cities nation-wide where Interstate properties
are located.
The partnership was officially launched on Friday, June 19^th and was well
attended by many Interstate employees at their offices in Virginia. The
DMRF would like to extend our many thanks to member Hunter Webster who
spearheaded this partnership. During the launch, Hunter very candidly
discussed his own experiences with dystonia and fielded a myriad of
questions from his colleagues.
Do you have ideas about how you can make a difference? Please email
[mailto:enewsletter@dystonia-foundation.org]
enewsletter@dystonia-foundation.org today!
...and another
Many are probably aware that member Brian Stephenson will be running in
the Bank of America Chicago Marathon on behalf of the DMRF in October.
Brian very graciously agreed to share his story and his progress in a
training blog. Please visit [http://dmrfaccidentalhero.blogspot.com]
http://dmrfaccidentalhero.blogspot.com to see how he is faring, what
motivates and inspires him, and why he runs - he runs because he can. And
he runs for others who can’t.
Would you like to join Brian in his efforts
to make a difference?
Show your support today.
[http://www.rsvpbook.com/event.php?474735]
http://www.rsvpbook.com/event.php?474735
Did you know?
We recently declared the week of June 29th has been officially declared
DMRF Support Group Leader Appreciation Week!
Support group leaders are amazing people. Despite their own challenges in
living with dystonia, they work tirelessly to help others affected by
dystonia. They are the backbone of the DMRF and the work they do is vital
to the Foundation’s mission and our ability to really provide support to
patients and their families.
It is fitting that this recognition be the week our nation celebrates the
Independence Day holiday – as support group leaders are key to supporting
those affected by dystonia to achieve independence from dystonia. Through
their ongoing efforts support group leaders provide opportunities for
education and learning to take place. Every day, these unsung heroes are
helping people connect with other people – providing them with a precious
gift – knowing that they are not alone in this battle and that the
Foundation is here for them and their families. Because of these leaders,
many people now know that dystonia does not define them.
It is not too late to reach out and express your appreciation to a support
group leader today.
A unique opportunity
We ask that you consider becoming a brain donor and give dystonia
researchers the unique opportunity to analyze the inner workings of the
dystonia brain. Both those who have dystonia, as well as those who do not
are encouraged to enroll so that researchers can compare and contrast brain
tissue.
What causes this complex disorder to occur? Your generous and selfless
donations can help us answer that question and many more, and lead us
closer to a cure.
If you are interested in learning more about what is involved in
registering as a brain donor, please contact Martha Murphy, Brain Bank
Liaison at [mailto:brainbank@dystonia-foundation.org]
brainbank@dystonia-foundation.org or phone 800.377.3978.
Important: Please make sure to provide your full name, your postal mailing
address, your phone number(s) and your e-mail address (if applicable) so
that we can more easily contact you and mail you information.
Juice Newton Benefit Concert
GRAMMY AWARD-WINNING RECORDING ARTIST JUICE NEWTON PERFORMS IN DYSTONIA
BENEFIT CONCERT IN SAN DIEGO. Mark your calendars for Sat., 10/3/09 at
7:00 p.m. because that is the date when Juice Newton (known for such hits
as “Queen of Hearts” and “Angel of the Morning”) will take the
stage at the beautiful Joan Kroc Theatre in San Diego, CA to perform in a
concert to benefit dystonia.
The concert is sponsored by the Dystonia Support & Advocacy Group of San
Diego County and proceeds will be equally divided between the DMRF and the
NSDA. If you live in or near San Diego, this is a must-do event! If you
live farther away, this is the perfect time to plan a trip to San Diego.
Tickets are $25 and $40 and can be purchased at
[http://www.showboxoffice.com/] http://www.showboxoffice.com/ or by phoning
Paul Fowler at 858-922-8309. If you absolutely cannot make it to the
concert, but would like to support this event by making a contribution, all
donations will be greatly appreciated.
Please contact Martha Murphy, support group leader/founder, at
[mailto:tmmurphy@juno.com] tmmurphy@juno.com or call 619.582.1961 for more
information if you are interested in making a donation or need additional
information. Thank you.
Quick and easy fundraising idea
Do you shop online? Are you looking for an easy way to support the
efforts of the DMRF? iGive might be just the program for you! With over
700 brand name stores, a portion of your online purchases can be donated to
the Foundation.
Click here for more information and to sign up:
[http://www.igive.com/welcome/warmwelcome.cfm?c=1413 ]
http://www.igive.com/welcome/warmwelcome.cfm?c=1413
DMRF Rewind
Recently volunteers Nancy and Larry Present hosted the 3^rd annual
“Moving Forward” St Louis Dystonia Walk-a-thon. As expected the event
was a great success raising with approximately 125 walkers in attendance
and raising over $15,000. Over the three years of this event, the walk has
raised over $60,000 for dystonia research and awareness. Please join us in
congratulating the Presents for their continued hard work and dedication to
the DMRF.
If you would like to organize a walk or event in your community, contact
[mailto:kanderson@dystonia-foudnation.org]
kanderson@dystonia-foudnation.org.
Mark Your Calendars
August 10, 2009 - Dine Out for Dystonia (NJ) - Tortilla Press,
Collingswood, NJ
[http://www.dystonia-foundation.org/pages/view_event/225.php?id=168]
http://www.dystonia-foundation.org/pages/view_event/225.php?id=168
August 17, 2009 - 1st Annual Minnesota Golf Tournament (MN) - Gopher Hills
Golf Club
Come see Minnesota native and musician and DMRF Ambassador, Billy
McLaughlin (can you link to his website), perform following the first
annual MN Golf Classic.
For over twenty years, McLaughlin performed his intricate guitar
compositions for audiences around the world. His career was derailed when
he developed dystonia in his right hand. After doctors confirmed no current
treatments could fully restore the use of his hand, he took the
extraordinary step of relearning his music left handed.
The Golf Classic and Concert will be hosted at Gopher Hills Golf Course,
Cannon Falls, MN.
For more information and tickets, contact
[mailto:kanderson@dystonia-foundation.org]
kanderson@dystonia-foundation.org or register at
[http://www.rsvpbook.com/event.php?437524]
http://www.rsvpbook.com/event.php?437524.
September 19, 2009 - Dystonia Awareness Jamboree (OK)
[http://www.dystonia-foundation.org/pages/view_event/225.php?id=166]
http://www.dystonia-foundation.org/pages/view_event/225.php?id=166
October 3, 2009 - Martini Open (OH)
More information coming soon!
October 11, 2009 - NJ Dogs for Dystonia (NJ)
[http://www.dystonia-foundation.org/pages/view_event/225.php?id=72]
http://www.dystonia-foundation.org/pages/view_event/225.php?id=72
October 25, 2009 - 5th Annual Basket Bash (IL)
More information coming soon!
October 29, 2009 - Tricky Tray (NJ)
More information coming soon!
Happy 4th of July!
Order your DMRF tshirt today!
Show your support and raise awareness. Order your DMRF tshirt today for
$20.
Sizes available:
Children's S, M, L
(available in grey & white)
Women's S, M, L and XL
(available in blue & white)
Women's XXL
(available in white only)
Men's S, M, L, XL and 2X
(available in grey & white)
Please note that women's shirts are fitted and tend to run small. If
unsure of sizing, please order an equivalent size in Men's.
To order your shirt,
[https://dystonia.securesites.net/dystonia/pages/merchandise/277.php]
click here
Tell us how we are doing. We would love to hear your thoughts about the
newsletter. Email us today at
[mailto:enewsletter@dystonia-foundation.org?subject=Feedback%20about%20eNews]
enewsletter@dystonia-foundation.org
Would you like to access the newsletter 24/7?
[http://dmrfenews.blogspot.com] dmrfenews.blogspot.com
Would you like to receive updates by text message?
Text DYSTONIA to 90999.
Are you an iPhone
or iTouch user?
If so, check out the DMRF's new app to stay up-to-date on the latest news
from the Foundation and the dystonia community.
To get the app, visit the iTunes App store and search for "DMRF app".
Join us on one of our social networks:
[http://www.facebook.com/inbox/?ref=mb#/pages/Dystonia-Medical-Research-Foundation/46820882711]
[http://www.myspace.com/thedmrf]
[http://thedmrf.ning.com/]
[http://twitter.com/dmrf]
Contact Information
One East Wacker Drive, Suite 2810
Chicago, Illinois 60601
800.377.3978
[mailto:enewsletter@dystonia-foundation.org?subject=Questions,%20comments%20or%20concerns]
enewsletter@dystonia-foundation.org
[http://www.dystonia-foundation.org] www.dystonia-foundation.org
© 2009 DMRF
July 2009 -To ensure deliverability, please add
enewsletter@dystonia-foundation.org to your address book.
Families share your stories
John H. Menkes
Children & Family Dystonia Symposium
August 14-16, 2009 – Chicago, Illinois
Where your kids can just be kids…
Where your questions will be answered…
Where everyone understands what it’s like to raise a child with
dystonia.
Join us for a special meeting for affected children, teens, and their
families. This is a great time to come together to share and learn from the
experts and one another. This year, we are particularly pleased to
announce that this great event has been named in memory and honor of John
H. Menkes, MD, founding Scientific Director of the DMRF.
[http://www.dystonia-foundation.org/pages/5th_children___family_symposium/543.php]
Click here to learn more!
A limited number of scholarships to assist with the cost of attending the
symposium are available. For more information, contact 312-755-0198.
Please note: The DMRF has negotiated a special hotel rate of $159 per
night for a limited number of rooms for Symposium attendees. To take
advantage of the special rate, book early, no later than July 20th.
Keep the stories coming...
The DMRF received an outporing of emails from many of you during Dystonia
Awareness Week and the month of June. Thank you to everyone who has shared
their dystonia experiences to raise awareness. Your voices, your stories
not only shed light on dystonia but also often provide comfort to others
experiencing the same. Let's keep the momentum going, continuing on with
our combined efforts to make a difference.
Join us at [http://thedmrf.ning.com ] http://thedmrf.ning.com to share
your story or respond to others. Your one act may change another's life
for the good.
So act now!
[http://thedmrf.ning.com] http://thedmrf.ning.com
One person making a difference...
We are pleased to announce that Interstate Hotels & Resorts, the world
leader in hotel management, has taken DMRF on as a charitable partner
through their Interstate Gives Back (IGB) program. One of Interstate
Hotels & Resorts’ seven core values is Community Service, which is
carried out company-wide at two corporate offices in Arlington, Virginia
and Irving, Texas, and in cities nation-wide where Interstate properties
are located.
The partnership was officially launched on Friday, June 19^th and was well
attended by many Interstate employees at their offices in Virginia. The
DMRF would like to extend our many thanks to member Hunter Webster who
spearheaded this partnership. During the launch, Hunter very candidly
discussed his own experiences with dystonia and fielded a myriad of
questions from his colleagues.
Do you have ideas about how you can make a difference? Please email
[mailto:enewsletter@dystonia-foundation.org]
enewsletter@dystonia-foundation.org today!
...and another
Many are probably aware that member Brian Stephenson will be running in
the Bank of America Chicago Marathon on behalf of the DMRF in October.
Brian very graciously agreed to share his story and his progress in a
training blog. Please visit [http://dmrfaccidentalhero.blogspot.com]
http://dmrfaccidentalhero.blogspot.com to see how he is faring, what
motivates and inspires him, and why he runs - he runs because he can. And
he runs for others who can’t.
Would you like to join Brian in his efforts
to make a difference?
Show your support today.
[http://www.rsvpbook.com/event.php?474735]
http://www.rsvpbook.com/event.php?474735
Did you know?
We recently declared the week of June 29th has been officially declared
DMRF Support Group Leader Appreciation Week!
Support group leaders are amazing people. Despite their own challenges in
living with dystonia, they work tirelessly to help others affected by
dystonia. They are the backbone of the DMRF and the work they do is vital
to the Foundation’s mission and our ability to really provide support to
patients and their families.
It is fitting that this recognition be the week our nation celebrates the
Independence Day holiday – as support group leaders are key to supporting
those affected by dystonia to achieve independence from dystonia. Through
their ongoing efforts support group leaders provide opportunities for
education and learning to take place. Every day, these unsung heroes are
helping people connect with other people – providing them with a precious
gift – knowing that they are not alone in this battle and that the
Foundation is here for them and their families. Because of these leaders,
many people now know that dystonia does not define them.
It is not too late to reach out and express your appreciation to a support
group leader today.
A unique opportunity
We ask that you consider becoming a brain donor and give dystonia
researchers the unique opportunity to analyze the inner workings of the
dystonia brain. Both those who have dystonia, as well as those who do not
are encouraged to enroll so that researchers can compare and contrast brain
tissue.
What causes this complex disorder to occur? Your generous and selfless
donations can help us answer that question and many more, and lead us
closer to a cure.
If you are interested in learning more about what is involved in
registering as a brain donor, please contact Martha Murphy, Brain Bank
Liaison at [mailto:brainbank@dystonia-foundation.org]
brainbank@dystonia-foundation.org or phone 800.377.3978.
Important: Please make sure to provide your full name, your postal mailing
address, your phone number(s) and your e-mail address (if applicable) so
that we can more easily contact you and mail you information.
Juice Newton Benefit Concert
GRAMMY AWARD-WINNING RECORDING ARTIST JUICE NEWTON PERFORMS IN DYSTONIA
BENEFIT CONCERT IN SAN DIEGO. Mark your calendars for Sat., 10/3/09 at
7:00 p.m. because that is the date when Juice Newton (known for such hits
as “Queen of Hearts” and “Angel of the Morning”) will take the
stage at the beautiful Joan Kroc Theatre in San Diego, CA to perform in a
concert to benefit dystonia.
The concert is sponsored by the Dystonia Support & Advocacy Group of San
Diego County and proceeds will be equally divided between the DMRF and the
NSDA. If you live in or near San Diego, this is a must-do event! If you
live farther away, this is the perfect time to plan a trip to San Diego.
Tickets are $25 and $40 and can be purchased at
[http://www.showboxoffice.com/] http://www.showboxoffice.com/ or by phoning
Paul Fowler at 858-922-8309. If you absolutely cannot make it to the
concert, but would like to support this event by making a contribution, all
donations will be greatly appreciated.
Please contact Martha Murphy, support group leader/founder, at
[mailto:tmmurphy@juno.com] tmmurphy@juno.com or call 619.582.1961 for more
information if you are interested in making a donation or need additional
information. Thank you.
Quick and easy fundraising idea
Do you shop online? Are you looking for an easy way to support the
efforts of the DMRF? iGive might be just the program for you! With over
700 brand name stores, a portion of your online purchases can be donated to
the Foundation.
Click here for more information and to sign up:
[http://www.igive.com/welcome/warmwelcome.cfm?c=1413 ]
http://www.igive.com/welcome/warmwelcome.cfm?c=1413
DMRF Rewind
Recently volunteers Nancy and Larry Present hosted the 3^rd annual
“Moving Forward” St Louis Dystonia Walk-a-thon. As expected the event
was a great success raising with approximately 125 walkers in attendance
and raising over $15,000. Over the three years of this event, the walk has
raised over $60,000 for dystonia research and awareness. Please join us in
congratulating the Presents for their continued hard work and dedication to
the DMRF.
If you would like to organize a walk or event in your community, contact
[mailto:kanderson@dystonia-foudnation.org]
kanderson@dystonia-foudnation.org.
Mark Your Calendars
August 10, 2009 - Dine Out for Dystonia (NJ) - Tortilla Press,
Collingswood, NJ
[http://www.dystonia-foundation.org/pages/view_event/225.php?id=168]
http://www.dystonia-foundation.org/pages/view_event/225.php?id=168
August 17, 2009 - 1st Annual Minnesota Golf Tournament (MN) - Gopher Hills
Golf Club
Come see Minnesota native and musician and DMRF Ambassador, Billy
McLaughlin (can you link to his website), perform following the first
annual MN Golf Classic.
For over twenty years, McLaughlin performed his intricate guitar
compositions for audiences around the world. His career was derailed when
he developed dystonia in his right hand. After doctors confirmed no current
treatments could fully restore the use of his hand, he took the
extraordinary step of relearning his music left handed.
The Golf Classic and Concert will be hosted at Gopher Hills Golf Course,
Cannon Falls, MN.
For more information and tickets, contact
[mailto:kanderson@dystonia-foundation.org]
kanderson@dystonia-foundation.org or register at
[http://www.rsvpbook.com/event.php?437524]
http://www.rsvpbook.com/event.php?437524.
September 19, 2009 - Dystonia Awareness Jamboree (OK)
[http://www.dystonia-foundation.org/pages/view_event/225.php?id=166]
http://www.dystonia-foundation.org/pages/view_event/225.php?id=166
October 3, 2009 - Martini Open (OH)
More information coming soon!
October 11, 2009 - NJ Dogs for Dystonia (NJ)
[http://www.dystonia-foundation.org/pages/view_event/225.php?id=72]
http://www.dystonia-foundation.org/pages/view_event/225.php?id=72
October 25, 2009 - 5th Annual Basket Bash (IL)
More information coming soon!
October 29, 2009 - Tricky Tray (NJ)
More information coming soon!
Happy 4th of July!
Order your DMRF tshirt today!
Show your support and raise awareness. Order your DMRF tshirt today for
$20.
Sizes available:
Children's S, M, L
(available in grey & white)
Women's S, M, L and XL
(available in blue & white)
Women's XXL
(available in white only)
Men's S, M, L, XL and 2X
(available in grey & white)
Please note that women's shirts are fitted and tend to run small. If
unsure of sizing, please order an equivalent size in Men's.
To order your shirt,
[https://dystonia.securesites.net/dystonia/pages/merchandise/277.php]
click here
Tell us how we are doing. We would love to hear your thoughts about the
newsletter. Email us today at
[mailto:enewsletter@dystonia-foundation.org?subject=Feedback%20about%20eNews]
enewsletter@dystonia-foundation.org
Would you like to access the newsletter 24/7?
[http://dmrfenews.blogspot.com] dmrfenews.blogspot.com
Would you like to receive updates by text message?
Text DYSTONIA to 90999.
Are you an iPhone
or iTouch user?
If so, check out the DMRF's new app to stay up-to-date on the latest news
from the Foundation and the dystonia community.
To get the app, visit the iTunes App store and search for "DMRF app".
Join us on one of our social networks:
[http://www.facebook.com/inbox/?ref=mb#/pages/Dystonia-Medical-Research-Foundation/46820882711]
[http://www.myspace.com/thedmrf]
[http://thedmrf.ning.com/]
[http://twitter.com/dmrf]
Contact Information
One East Wacker Drive, Suite 2810
Chicago, Illinois 60601
800.377.3978
[mailto:enewsletter@dystonia-foundation.org?subject=Questions,%20comments%20or%20concerns]
enewsletter@dystonia-foundation.org
[http://www.dystonia-foundation.org] www.dystonia-foundation.org
© 2009 DMRF
Monday, June 1, 2009
DMRF eNews - June 2009
DMRF eNews
June 2009 -To ensure deliverability, please add
enewsletter@dystonia-foundation.org to your address book.
National Dystonia Awareness Week
June 1 - 7
Our story...
For more than 30 years, the Dystonia Medical Research Foundation has
worked to wipe out dystonia. Our efforts began long before most people,
including healthcare professionals, really knew or cared about dystonia.
The progress of the dystonia community is directly attributable to those of
you willing to share your stories and your insights. Whether it is on
television or in a written publication in a large city or a small
community, or perhaps as importantly by talking with someone you know or a
complete stranger in the checkout line at a grocery store – you are
making a difference. Awareness is a process – every piece important,
every person’s story contributing to our goal of helping others
understand what dystonia is and how we intend to fight it.
This is National Dystonia Awareness Week. We encourage you to continue to
tell your stories and then let us know of your activities. Let’s share
our awareness experiences and successes with each other. We can’t wait
to hear of your activities this week. Each and every interaction is
important for together we are making a difference.
...Your stories
Visit [http://thedmrf.ning.com/] http://thedmrf.ning.com or email us at
[mailto:dystonia@dystonia-foundation.org?subject=I'd like to share my
story] dystonia@dystonia-foundation.org and share your story.
If you'd like to share your story with others, consider participating in
the 2009 DMRF Awareness Week Campaign.
Email [mailto:enewsletter@dystonia-foudnation.org]
enewsletter@dystonia-foudnation.org today and we will help you create and
send your story to your loved ones. This is a great way to build awareness
and generate support for our work in the dystonia community.
Brian's story
Brian began to first experience symptoms as early as 10 years old. He
went from being a happy, active child to a young adult who tolerated the
pain because he just wanted a normal life. It took several years and
numerous visits to doctors offices before he was finally diagnosed. For
Brian, deep brain stimulation (DBS) worked and opened a world of
possibilities.
In 2009, Brian will be running in the Bank of America Chicago Marathon on
behalf of the Foundation. He has refused to let dystonia stop him from
achieving his dreams and goals. With the loving support of family and
friends, he runs because he can. And he runs for others who can’t. He
runs because he is dedicated to living his life to the fullest and to
making a difference where he can.
Would you like to keep up-to-date with Brian's progress as he prepares for
the marathon?
Visit his training blog at [http://dmrfaccidentalhero.blogspot.com]
http://dmrfaccidentalhero.blogspot.com.
Would you like to join Brian in his efforts
to make a difference?
Show your support today.
[http://www.rsvpbook.com/event.php?474735]
http://www.rsvpbook.com/event.php?474735
Together we will write the next chapter...
John H. Menkes
Children & Family Dystonia Symposium
August 14-16, 2009 – Chicago, Illinois
Where your kids can just be kids…
Where your questions will be answered…
Where everyone understands what it’s like to raise a child with
dystonia.
This is a special meeting for affected children, teens, and their
families. The purpose of the symposium is to bring families together to
learn about dystonia and the DMRF, interact with experts, and find support
among one another. There will be special sessions for children under 13,
teens, siblings, and parents. The event is named in memory and honor of
John H. Menkes, MD, founding Scientific Director of the DMRF.
[http://www.dystonia-foundation.org/pages/5th_children___family_symposium/543.php]
Click here to learn more!
A limited number of scholarships to assist with the cost of attending the
symposium are available. For more information, contact 312-755-0198
...and with your help, we will work to find the answers to write a new
ending!
Brain donation provides a unique opportunity for individuals to truly make
an invaluable contribution to dystonia research. DMRF has established a
partnership with the NICHD Brain & Tissue Bank for Developmental Disorders
at the University of Maryland and recovered tissue is preserved at their
facility and made available for study by qualified dystonia researchers.
The registration process is easy and just requires that some forms be
filled out and signed. There is no cost involved.
If you would like to learn more about this very special program, please
contact Martha Murphy, Brain Bank Liaison at
[mailto:brainbank@dystonia-foundation.org?subject=I'd like more
information] brainbank@dystonia-foundation.org or call 800-377-3978 or
312-755-0198.
Please be certain to provide your full name, your postal mailing address
and your phone number(s) so that we can mail you information and
communicate with you more easily.
Juice Newton Benefit Concert
JUICE NEWTON IN PERFORMS IN CONCERT TO SUPPORT OUR CAUSE!
Grammy award-winning recording artist Juice Newton (“Queen of Hearts,”
“Angel of the Morning”) will once again perform as part of a benefit
concert in San Diego to help raise funds and awareness for dystonia. The
concert will take place at the beautiful 600-seat Joan Kroc Theatre in San
Diego on Saturday, October 3, 2009 at 7:00 p.m. Talented local entertainer
Carol Curtis will serve as the opening act.
This is a Dystonia Support & Advocacy Group of San Diego County event and
the group is affiliated with both DMRF & NSDA. Ticket prices are $25 and
$40 and all proceeds will be divided equally between DMRF and NSDA.
Special pre-sale tickets (ONLY FOR THOSE WITH DYSTONIA) will go on sale on
June 1^st at [http://www.showboxoffice.com/] www.showboxoffice.com All
other tickets will go on sale on July 1^st.
If you cannot attend the show but would like to be a show sponsor or make
a contribution or if you have any questions, please contact Martha Murphy,
Group Leader/Founder at [mailto:tmmurphy@juno.com?subject=Juice Newton]
tmmurphy@juno.com or Paul Fowler, Event Chair at
[mailto:sdvoicehelp@earthlink.net?subject=Juice Newton]
sdvoicehelp@earthlink.net
For more information on Juice Newton, visit [http://www.juicenewton.com/]
www.juicenewton.com or [http://www.juicenewtonfanclub.com/]
www.juicenewtonfanclub.com
Mark Your Calendars
June 1st through 7th - Dystonia Awareness Week (Nationwide)
June 7, 2009 - Los Angeles Dystonia Support Group (CA) - USC University
Hospital
Email Barbara Ellis at [mailto:LADystoSupport@aol.com?subject=I'd like
more information] LADystoSupport@aol.com for more information.
August 17, 2009 - 1st Annual Minnesota Golf Tournament (MN) - Gopher Hills
Golf Club
[http://www.rsvpbook.com/event.php?437524]
http://www.rsvpbook.com/event.php?437524
Show your support and raise awareness. During the month of June, get your
tshirt for the special price of $15. Starting July 1st, the price of the
shirt will increase to $20.
Sizes available:
Women's S, M, L and XL
Men's S, M, L, XL and 2X
To order your shirt, email Julie at [mailto:jmack@dystonia-foundation.org]
jmack@dystonia-foundation.org or call 312.755.0198. Please be prepared to
indicate the color shirt, size and method of payment.
Tell us how we are doing. We would love to hear your thoughts about the
newsletter. Email us today at
[mailto:enewsletter@dystonia-foundation.org?subject=Feedback%20about%20eNews]
enewsletter@dystonia-foundation.org
Would you like to access the newsletter 24/7?
[http://dmrfenews.blogspot.com] dmrfenews.blogspot.com
Would you like to receive updates by text message?
Text DYSTONIA to 90999.
Join us on one of our social networks:
[http://www.facebook.com/inbox/?ref=mb]
[http://www.myspace.com/thedmrf]
[http://thedmrf.ning.com/]
[http://twitter.com/dmrf]
Contact Information
One East Wacker Drive, Suite 2810
Chicago, Illinois 60601
800.377.3978
[mailto:enewsletter@dystonia-foundation.org?subject=Questions,%20comments%20or%20concerns]
enewsletter@dystonia-foundation.org
[http://www.dystonia-foundation.org] www.dystonia-foundation.org
© 2009 DMRF
June 2009 -To ensure deliverability, please add
enewsletter@dystonia-foundation.org to your address book.
National Dystonia Awareness Week
June 1 - 7
Our story...
For more than 30 years, the Dystonia Medical Research Foundation has
worked to wipe out dystonia. Our efforts began long before most people,
including healthcare professionals, really knew or cared about dystonia.
The progress of the dystonia community is directly attributable to those of
you willing to share your stories and your insights. Whether it is on
television or in a written publication in a large city or a small
community, or perhaps as importantly by talking with someone you know or a
complete stranger in the checkout line at a grocery store – you are
making a difference. Awareness is a process – every piece important,
every person’s story contributing to our goal of helping others
understand what dystonia is and how we intend to fight it.
This is National Dystonia Awareness Week. We encourage you to continue to
tell your stories and then let us know of your activities. Let’s share
our awareness experiences and successes with each other. We can’t wait
to hear of your activities this week. Each and every interaction is
important for together we are making a difference.
...Your stories
Visit [http://thedmrf.ning.com/] http://thedmrf.ning.com or email us at
[mailto:dystonia@dystonia-foundation.org?subject=I'd like to share my
story] dystonia@dystonia-foundation.org and share your story.
If you'd like to share your story with others, consider participating in
the 2009 DMRF Awareness Week Campaign.
Email [mailto:enewsletter@dystonia-foudnation.org]
enewsletter@dystonia-foudnation.org today and we will help you create and
send your story to your loved ones. This is a great way to build awareness
and generate support for our work in the dystonia community.
Brian's story
Brian began to first experience symptoms as early as 10 years old. He
went from being a happy, active child to a young adult who tolerated the
pain because he just wanted a normal life. It took several years and
numerous visits to doctors offices before he was finally diagnosed. For
Brian, deep brain stimulation (DBS) worked and opened a world of
possibilities.
In 2009, Brian will be running in the Bank of America Chicago Marathon on
behalf of the Foundation. He has refused to let dystonia stop him from
achieving his dreams and goals. With the loving support of family and
friends, he runs because he can. And he runs for others who can’t. He
runs because he is dedicated to living his life to the fullest and to
making a difference where he can.
Would you like to keep up-to-date with Brian's progress as he prepares for
the marathon?
Visit his training blog at [http://dmrfaccidentalhero.blogspot.com]
http://dmrfaccidentalhero.blogspot.com.
Would you like to join Brian in his efforts
to make a difference?
Show your support today.
[http://www.rsvpbook.com/event.php?474735]
http://www.rsvpbook.com/event.php?474735
Together we will write the next chapter...
John H. Menkes
Children & Family Dystonia Symposium
August 14-16, 2009 – Chicago, Illinois
Where your kids can just be kids…
Where your questions will be answered…
Where everyone understands what it’s like to raise a child with
dystonia.
This is a special meeting for affected children, teens, and their
families. The purpose of the symposium is to bring families together to
learn about dystonia and the DMRF, interact with experts, and find support
among one another. There will be special sessions for children under 13,
teens, siblings, and parents. The event is named in memory and honor of
John H. Menkes, MD, founding Scientific Director of the DMRF.
[http://www.dystonia-foundation.org/pages/5th_children___family_symposium/543.php]
Click here to learn more!
A limited number of scholarships to assist with the cost of attending the
symposium are available. For more information, contact 312-755-0198
...and with your help, we will work to find the answers to write a new
ending!
Brain donation provides a unique opportunity for individuals to truly make
an invaluable contribution to dystonia research. DMRF has established a
partnership with the NICHD Brain & Tissue Bank for Developmental Disorders
at the University of Maryland and recovered tissue is preserved at their
facility and made available for study by qualified dystonia researchers.
The registration process is easy and just requires that some forms be
filled out and signed. There is no cost involved.
If you would like to learn more about this very special program, please
contact Martha Murphy, Brain Bank Liaison at
[mailto:brainbank@dystonia-foundation.org?subject=I'd like more
information] brainbank@dystonia-foundation.org or call 800-377-3978 or
312-755-0198.
Please be certain to provide your full name, your postal mailing address
and your phone number(s) so that we can mail you information and
communicate with you more easily.
Juice Newton Benefit Concert
JUICE NEWTON IN PERFORMS IN CONCERT TO SUPPORT OUR CAUSE!
Grammy award-winning recording artist Juice Newton (“Queen of Hearts,”
“Angel of the Morning”) will once again perform as part of a benefit
concert in San Diego to help raise funds and awareness for dystonia. The
concert will take place at the beautiful 600-seat Joan Kroc Theatre in San
Diego on Saturday, October 3, 2009 at 7:00 p.m. Talented local entertainer
Carol Curtis will serve as the opening act.
This is a Dystonia Support & Advocacy Group of San Diego County event and
the group is affiliated with both DMRF & NSDA. Ticket prices are $25 and
$40 and all proceeds will be divided equally between DMRF and NSDA.
Special pre-sale tickets (ONLY FOR THOSE WITH DYSTONIA) will go on sale on
June 1^st at [http://www.showboxoffice.com/] www.showboxoffice.com All
other tickets will go on sale on July 1^st.
If you cannot attend the show but would like to be a show sponsor or make
a contribution or if you have any questions, please contact Martha Murphy,
Group Leader/Founder at [mailto:tmmurphy@juno.com?subject=Juice Newton]
tmmurphy@juno.com or Paul Fowler, Event Chair at
[mailto:sdvoicehelp@earthlink.net?subject=Juice Newton]
sdvoicehelp@earthlink.net
For more information on Juice Newton, visit [http://www.juicenewton.com/]
www.juicenewton.com or [http://www.juicenewtonfanclub.com/]
www.juicenewtonfanclub.com
Mark Your Calendars
June 1st through 7th - Dystonia Awareness Week (Nationwide)
June 7, 2009 - Los Angeles Dystonia Support Group (CA) - USC University
Hospital
Email Barbara Ellis at [mailto:LADystoSupport@aol.com?subject=I'd like
more information] LADystoSupport@aol.com for more information.
August 17, 2009 - 1st Annual Minnesota Golf Tournament (MN) - Gopher Hills
Golf Club
[http://www.rsvpbook.com/event.php?437524]
http://www.rsvpbook.com/event.php?437524
Help Increase Awareness
Would you like to get involved with the foundation and help increase awareness and funding for dystonia in your community? DMRF has many event options to fit your community and your personality. If you would like to learn more, please contact kanderson@dystonia-foundation.org.
Show your support and raise awareness. During the month of June, get your
tshirt for the special price of $15. Starting July 1st, the price of the
shirt will increase to $20.
Sizes available:
Women's S, M, L and XL
Men's S, M, L, XL and 2X
To order your shirt, email Julie at [mailto:jmack@dystonia-foundation.org]
jmack@dystonia-foundation.org or call 312.755.0198. Please be prepared to
indicate the color shirt, size and method of payment.
Tell us how we are doing. We would love to hear your thoughts about the
newsletter. Email us today at
[mailto:enewsletter@dystonia-foundation.org?subject=Feedback%20about%20eNews]
enewsletter@dystonia-foundation.org
Would you like to access the newsletter 24/7?
[http://dmrfenews.blogspot.com] dmrfenews.blogspot.com
Would you like to receive updates by text message?
Text DYSTONIA to 90999.
Join us on one of our social networks:
[http://www.facebook.com/inbox/?ref=mb]
[http://www.myspace.com/thedmrf]
[http://thedmrf.ning.com/]
[http://twitter.com/dmrf]
Contact Information
One East Wacker Drive, Suite 2810
Chicago, Illinois 60601
800.377.3978
[mailto:enewsletter@dystonia-foundation.org?subject=Questions,%20comments%20or%20concerns]
enewsletter@dystonia-foundation.org
[http://www.dystonia-foundation.org] www.dystonia-foundation.org
© 2009 DMRF
Friday, May 1, 2009
DMRF eNews - May 2009
DMRF eNews
May 2009
To ensure your receipt of the DMRF eNews, please add
enewsletter@dystonia-foundation.org to your address book.
In the news...
...and the awareness keeps on growing!
Did you have chance to watch the dystonia segment on the talk show The
Doctors? We would like to thank Alex for her candidness about her
experiences with dystonia as well as Dr. Mark Lew for all of his efforts in
the dystonia community.
Would you like to share your thoughts?
Visit [http://thedmrf.ning.com] http://thedmrf.ning.com.
Botulinum Toxin A Dysport® approved
As reported by
[http://www.reuters.com/article/euRegulatoryNews/idUSBNG40742820090430]
Reuters on April 30th, Medicis Pharmaceutical and Ispen stated that US
health regulators approved Dysport for cervical dystonia and as an
anti-wrinkle treatment.
[http://www.reuters.com/article/euRegulatoryNews/idUSBNG40742820090430]
Click here to read more.
New research announced
The DMRF is pleased to announce the research initiatives being funded in
2009. Summaries for each study will be available later in the year.
[http://www.dystonia-foundation.org/pages/research_in_2009/148.php] Click
here to see which projects received funding
DMRF's Medical and Scientific Director, Mahlon DeLong, MD honored
In April, Emory University hosted a tribute to Mahlon DeLong, MD –
DMRF’s Scientific and Medical Director. The DeLong Celebration included
a day-long program: Basal Ganglia: Function, Movement Disorders and
Treatment Options, a symposium honoring the contributions of Mahlon DeLong,
MD;a celebration dinner honoring Dr. DeLong and presentations of the Courage
to Inspire Awards this year awarded to Muhammad and Lonnie Ali and Dr.
DeLong. The final component of this celebration was a public educational
program sponsored by Emory and the Dana Alliance for Brain Initiatives,
“Staying Sharp”.
It was a wonderful series of events to honor the many contributions of this
extraordinary man. Dr.DeLong’s research in the 1970’s, his
out-of-the-box thinking about the role of the basal ganglia has allowed for
the development of successful surgical treatments available to dystonia
patients today. The DMRF is so fortunate to have the benefit of Dr.
DeLong’s leadership, dedication and commitment. We congratulate him on his
many contributions and thank him for everything he has done to advance the
field.
Just diagnosed - now what?
After diagnosis, there are so many questions. What is dystonia? What
does my diagnosis mean? How does it impact me? What do I do next?
If you have these and other questions, we have a good place for you to
start getting answers and solve the puzzle.
[http://www.dystonia-foundation.org/filebin/Mo%20pdfs/SWF%20DystoniaPuzzles01.swf]
Click here to learn more.
FDA Safety label changes
On April 30, 2009, "the US Food and Drug Administration announced safety
label changes, including a boxed warning, and a Risk Evaluation and
Mitigation Strategy (REMS), are necessary for all botulinum toxin products"
Read more from the press release
[http://www.fda.gov/bbs/topics/NEWS/2009/NEW02005.html] here.
Billy McLaughlin appointed as DMRF Ambassador
The Foundation is proud to announce the appointment of musician and
person extraordinaire, Billy McLaughlin to the position of DMRF
Ambassador.Billy knows all to well what it means to struggle with dystonia
and how it feels to think that you are alone in this battle. Remarkably,
Billy has learned how to continue his musical career and agreed to share
his story in the new documentary film,
[http://www.youtube.com/user/cemiwire] “Changing Keys: Billy McLaughlin
and the Mysteries of Dystonia”, that made its world premiere in
Minneapolis last month.
Personal testimonies
Personal testimonies are the most effective way to raise dystonia awareness
and we are grateful to all of you who have shared your personal story so
that others can better understand what dystonia is and how it changes the
lives of those affected. Every time you talk about your dystonia – you are
helping someone to know about dystonia.
The DMRF wants to hear from you! We want to know your story and ask that
you consider sharing it with us.
Email [mailto:enewsletter@dystonia-foundation.org?subject=My%20story]
enewsletter@dystonia-foundation.org with how dystonia has impacted your
life or the life of a loved one.
DMRF Support Groups and more
Support groups offer a unique opportunity for people to come together to
share with one another, exchange information, raise awareness and advocate
within their respective communities.
Take for example the following groups.
The Fairfield Dystonia Support Group will meet on Saturday, 5/2 from
2-4:30 p.m. at Leader Carol Flynn's home in Fairfield, CA. Those with any
form of dystonia, along with your family members and friends, are invited
to attend. Come and share your story, learn from others, offer support and
receive support, and realize that you are not alone! The support group is
slowly growing and it is really helpful to meet and share with other people
who face similar daily challenges. Come join us!
For directions to the meeting, please contact Carol at caflynns@gmail.com
or 707-429-9668.
***
The Lincoln NE Dystonis Support Group is "Giving Back To Their Community"
on May 2nd as they work at the annual pasta-thon feed in Lincoln, NE. This
will be their 12th year volunteering to help serve approximately 7,000
marathon runners and their families the evening prior to the Lincoln
Marathon Race. They proudly hang their dystonia banner and answer any
questions the athletes ask.
A member of that group, Carmelita de la Guardia, continues on in the
group's tradition of raising awareness. Recently, Carmelita hosted a
cocktail party designed to raise awareness for dystonia. Among the 30
people in attendance was guest speaker, Hal Daub, who is a mayoral
candidate for the City of Omaha and who has agreed help raise awareness for
dystonia within the community.
***
The Dystonia Support & Advocacy Group of San Diego County invites you to
attend a special meeting on Saturday, 5/16 from 1-3:00 p.m. at Alvarado
Hospital, 6655 Alvarado Rd., San Diego, CA 92120. DR. VALENCIA PORTER from
the CHOPRA CENTER FOR WELL BEING in Carlsbad, CA www.chopra.com will be the
guest presenter. She will be discussing “Effective Strategies to Achieve
Mind/Body Health & Healing.” RSVP’s are appreciated to Martha Murphy,
Leader at [mailto:tmmurphy@juno.com?subject=May%2016th%20Meeting]
tmmurphy@juno.com or 619-582-1961.
***
The Los Angeles Dystonia Support Group is undergoing a leadership change.
Group founder and leader, Martin Beck, recently resigned due to
other commitments and we appreciate his years of service and wish him well.
Barbara Ellis has generously agreed to take over the leadership
role beginning with the next meeting that is scheduled for Sunday, June 7^th
from 1-3:00 p.m. at USC University Hospital, in the Copper Room on the 1^st
Floor, 1500 San Pablo St., Los Angeles, CA 90033. For more information or to
reach Barbara Ellis, e-mail her at
[mailto:LADystoSupport@aol.com?subject=Meeting%20information]
LADystoSupport@aol.com or phone714-841-9606 (please leave messages).
These are just a few examples of DMRFs support groups and volunteers at
work. We invite you find one in your area. To find a support group near
you,
[http://www.dystonia-foundation.org/pages/find_a_support_group/233.php]
click here.
Turn Over A Leaf was a SUCCESS!
Thank you to those who participated in the Macy's Turn Over A Leaf
shopping pass event. This year was the 2nd time DMRF joined forces with
Macy's and because of your support, we have raised twice as much money this
time around.
Paying tribute...
All of us are inspired especially by those who have touched our hearts in
ways we can never forget. At times, a simple thank you is not enough and
you find yourself wanting to do more. The DMRF can help you in your
efforts to pay tribute to that special someone. Whether it be online or a
letter writing campaign, we are here to help.
[http://www.rsvpbook.com/event.php?486930] Click here to see an example
what your tribute campaign could look like.
For more information on setting up a tribute campaign, please email
[mailto:enewsletter@dystonia-foundation.or?subject=Tribute%20campaign]
enewsletter@dystonia-foundation.org.
Mark your calendars
May 2, 2009 - Freedom Ride for Dystonia (DC)
- [http://www.rsvpbook.com/event.php?484755]
http://www.rsvpbook.com/event.php?484755
May 2, 2009 - Fairfield Dystonia Support Group Meeting (CA) - Email Carol
at [mailto:caflynns@gmail.com?subject=I%27d%20like%20more%20information]
caflynns@gmail.com for more information.
May 5th & 6th, 2009 - Advocacy Day (DC)
May 9, 2009 - Fireside Chat Dystonia Meeting (LA) - Ochsner Medical Center
Email Don LeBlanc at
[mailto:airdadone@charter.net?subject=I%27d%20like%20more%20information%20about%20the%20meeting]
airdadone@charter.net for more information.
May 16, 2009 - Dystonia Support & Advocacy Group of San Diego County (CA)
- Alvarado Hospital
Email Martha Murphy at
[mailto:tmmurphy@juno.com?subject=I%27d%20like%20more%20information]
tmmurphy@juno.com for more information.
May 24, 2009 - Moving Forward - 3rd Annual St. Louis Dystonia Walkathon
(MO) - Creve Coeur Park
[http://www.rsvpbook.com/event.php?422174]
http://www.rsvpbook.com/event.php?422174
June 1st through June 7th, 2009 - Dystonia Awareness Week (Nationwide)
June 7, 2009 - Los Angeles Dystonia Support Group (CA) - USC University
Hospital
Email Barbara Ellis at
[mailto:LADystoSupport@aol.com?subject=I%27d%20like%20more%20information]
LADystoSupport@aol.com for more information.
August 17, 2009 - 1st Annual Minnesota Golf Tournament (MN) - Gopher Hills
Golf Club
[http://www.rsvpbook.com/event.php?437524]
http://www.rsvpbook.com/event.php?437524
Dystonia Awareness Week
June 1 - June 7
Tell us how we are doing. We would love to hear your thoughts about the
newsletter. Email us today at
[mailto:enewsletter@dystonia-foundation.org?subject=Feedback%20about%20eNews]
enewsletter@dystonia-foundation.org
Would you like to access the newsletter 24/7?
[http://dmrfenews.blogspot.com] dmrfenews.blogspot.com
Would you like to receive updates by text message?
Text DYSTONIA to 90999
Join us on one of our social networks:
[http://www.facebook.com/home.php?]
[http://myspace.com/thedmrf]
[http://thedmrf.ning.com/]
[http://twitter.com/dmrf]
Contact Information:
One East Wacker Drive, Suite 2810
Chicago, Illinois 60601
800.377.3978
[mailto:enewsletter@dystonia-foundation.org?subject=Questions,%20comments%20or%20concerns]
enewsletter@dystonia-foundation.org
[http://www.dystonia-foundation.org] www.dystonia-foundation.org
© 2009 DMRF
May 2009
To ensure your receipt of the DMRF eNews, please add
enewsletter@dystonia-foundation.org to your address book.
In the news...
...and the awareness keeps on growing!
Did you have chance to watch the dystonia segment on the talk show The
Doctors? We would like to thank Alex for her candidness about her
experiences with dystonia as well as Dr. Mark Lew for all of his efforts in
the dystonia community.
Would you like to share your thoughts?
Visit [http://thedmrf.ning.com] http://thedmrf.ning.com.
Botulinum Toxin A Dysport® approved
As reported by
[http://www.reuters.com/article/euRegulatoryNews/idUSBNG40742820090430]
Reuters on April 30th, Medicis Pharmaceutical and Ispen stated that US
health regulators approved Dysport for cervical dystonia and as an
anti-wrinkle treatment.
[http://www.reuters.com/article/euRegulatoryNews/idUSBNG40742820090430]
Click here to read more.
New research announced
The DMRF is pleased to announce the research initiatives being funded in
2009. Summaries for each study will be available later in the year.
[http://www.dystonia-foundation.org/pages/research_in_2009/148.php] Click
here to see which projects received funding
DMRF's Medical and Scientific Director, Mahlon DeLong, MD honored
In April, Emory University hosted a tribute to Mahlon DeLong, MD –
DMRF’s Scientific and Medical Director. The DeLong Celebration included
a day-long program: Basal Ganglia: Function, Movement Disorders and
Treatment Options, a symposium honoring the contributions of Mahlon DeLong,
MD;a celebration dinner honoring Dr. DeLong and presentations of the Courage
to Inspire Awards this year awarded to Muhammad and Lonnie Ali and Dr.
DeLong. The final component of this celebration was a public educational
program sponsored by Emory and the Dana Alliance for Brain Initiatives,
“Staying Sharp”.
It was a wonderful series of events to honor the many contributions of this
extraordinary man. Dr.DeLong’s research in the 1970’s, his
out-of-the-box thinking about the role of the basal ganglia has allowed for
the development of successful surgical treatments available to dystonia
patients today. The DMRF is so fortunate to have the benefit of Dr.
DeLong’s leadership, dedication and commitment. We congratulate him on his
many contributions and thank him for everything he has done to advance the
field.
Just diagnosed - now what?
After diagnosis, there are so many questions. What is dystonia? What
does my diagnosis mean? How does it impact me? What do I do next?
If you have these and other questions, we have a good place for you to
start getting answers and solve the puzzle.
[http://www.dystonia-foundation.org/filebin/Mo%20pdfs/SWF%20DystoniaPuzzles01.swf]
Click here to learn more.
FDA Safety label changes
On April 30, 2009, "the US Food and Drug Administration announced safety
label changes, including a boxed warning, and a Risk Evaluation and
Mitigation Strategy (REMS), are necessary for all botulinum toxin products"
Read more from the press release
[http://www.fda.gov/bbs/topics/NEWS/2009/NEW02005.html] here.
Billy McLaughlin appointed as DMRF Ambassador
The Foundation is proud to announce the appointment of musician and
person extraordinaire, Billy McLaughlin to the position of DMRF
Ambassador.Billy knows all to well what it means to struggle with dystonia
and how it feels to think that you are alone in this battle. Remarkably,
Billy has learned how to continue his musical career and agreed to share
his story in the new documentary film,
[http://www.youtube.com/user/cemiwire] “Changing Keys: Billy McLaughlin
and the Mysteries of Dystonia”, that made its world premiere in
Minneapolis last month.
Personal testimonies
Personal testimonies are the most effective way to raise dystonia awareness
and we are grateful to all of you who have shared your personal story so
that others can better understand what dystonia is and how it changes the
lives of those affected. Every time you talk about your dystonia – you are
helping someone to know about dystonia.
The DMRF wants to hear from you! We want to know your story and ask that
you consider sharing it with us.
Email [mailto:enewsletter@dystonia-foundation.org?subject=My%20story]
enewsletter@dystonia-foundation.org with how dystonia has impacted your
life or the life of a loved one.
DMRF Support Groups and more
Support groups offer a unique opportunity for people to come together to
share with one another, exchange information, raise awareness and advocate
within their respective communities.
Take for example the following groups.
The Fairfield Dystonia Support Group will meet on Saturday, 5/2 from
2-4:30 p.m. at Leader Carol Flynn's home in Fairfield, CA. Those with any
form of dystonia, along with your family members and friends, are invited
to attend. Come and share your story, learn from others, offer support and
receive support, and realize that you are not alone! The support group is
slowly growing and it is really helpful to meet and share with other people
who face similar daily challenges. Come join us!
For directions to the meeting, please contact Carol at caflynns@gmail.com
or 707-429-9668.
***
The Lincoln NE Dystonis Support Group is "Giving Back To Their Community"
on May 2nd as they work at the annual pasta-thon feed in Lincoln, NE. This
will be their 12th year volunteering to help serve approximately 7,000
marathon runners and their families the evening prior to the Lincoln
Marathon Race. They proudly hang their dystonia banner and answer any
questions the athletes ask.
A member of that group, Carmelita de la Guardia, continues on in the
group's tradition of raising awareness. Recently, Carmelita hosted a
cocktail party designed to raise awareness for dystonia. Among the 30
people in attendance was guest speaker, Hal Daub, who is a mayoral
candidate for the City of Omaha and who has agreed help raise awareness for
dystonia within the community.
***
The Dystonia Support & Advocacy Group of San Diego County invites you to
attend a special meeting on Saturday, 5/16 from 1-3:00 p.m. at Alvarado
Hospital, 6655 Alvarado Rd., San Diego, CA 92120. DR. VALENCIA PORTER from
the CHOPRA CENTER FOR WELL BEING in Carlsbad, CA www.chopra.com will be the
guest presenter. She will be discussing “Effective Strategies to Achieve
Mind/Body Health & Healing.” RSVP’s are appreciated to Martha Murphy,
Leader at [mailto:tmmurphy@juno.com?subject=May%2016th%20Meeting]
tmmurphy@juno.com or 619-582-1961.
***
The Los Angeles Dystonia Support Group is undergoing a leadership change.
Group founder and leader, Martin Beck, recently resigned due to
other commitments and we appreciate his years of service and wish him well.
Barbara Ellis has generously agreed to take over the leadership
role beginning with the next meeting that is scheduled for Sunday, June 7^th
from 1-3:00 p.m. at USC University Hospital, in the Copper Room on the 1^st
Floor, 1500 San Pablo St., Los Angeles, CA 90033. For more information or to
reach Barbara Ellis, e-mail her at
[mailto:LADystoSupport@aol.com?subject=Meeting%20information]
LADystoSupport@aol.com or phone714-841-9606 (please leave messages).
These are just a few examples of DMRFs support groups and volunteers at
work. We invite you find one in your area. To find a support group near
you,
[http://www.dystonia-foundation.org/pages/find_a_support_group/233.php]
click here.
Turn Over A Leaf was a SUCCESS!
Thank you to those who participated in the Macy's Turn Over A Leaf
shopping pass event. This year was the 2nd time DMRF joined forces with
Macy's and because of your support, we have raised twice as much money this
time around.
Paying tribute...
All of us are inspired especially by those who have touched our hearts in
ways we can never forget. At times, a simple thank you is not enough and
you find yourself wanting to do more. The DMRF can help you in your
efforts to pay tribute to that special someone. Whether it be online or a
letter writing campaign, we are here to help.
[http://www.rsvpbook.com/event.php?486930] Click here to see an example
what your tribute campaign could look like.
For more information on setting up a tribute campaign, please email
[mailto:enewsletter@dystonia-foundation.or?subject=Tribute%20campaign]
enewsletter@dystonia-foundation.org.
Mark your calendars
May 2, 2009 - Freedom Ride for Dystonia (DC)
- [http://www.rsvpbook.com/event.php?484755]
http://www.rsvpbook.com/event.php?484755
May 2, 2009 - Fairfield Dystonia Support Group Meeting (CA) - Email Carol
at [mailto:caflynns@gmail.com?subject=I%27d%20like%20more%20information]
caflynns@gmail.com for more information.
May 5th & 6th, 2009 - Advocacy Day (DC)
May 9, 2009 - Fireside Chat Dystonia Meeting (LA) - Ochsner Medical Center
Email Don LeBlanc at
[mailto:airdadone@charter.net?subject=I%27d%20like%20more%20information%20about%20the%20meeting]
airdadone@charter.net for more information.
May 16, 2009 - Dystonia Support & Advocacy Group of San Diego County (CA)
- Alvarado Hospital
Email Martha Murphy at
[mailto:tmmurphy@juno.com?subject=I%27d%20like%20more%20information]
tmmurphy@juno.com for more information.
May 24, 2009 - Moving Forward - 3rd Annual St. Louis Dystonia Walkathon
(MO) - Creve Coeur Park
[http://www.rsvpbook.com/event.php?422174]
http://www.rsvpbook.com/event.php?422174
June 1st through June 7th, 2009 - Dystonia Awareness Week (Nationwide)
June 7, 2009 - Los Angeles Dystonia Support Group (CA) - USC University
Hospital
Email Barbara Ellis at
[mailto:LADystoSupport@aol.com?subject=I%27d%20like%20more%20information]
LADystoSupport@aol.com for more information.
August 17, 2009 - 1st Annual Minnesota Golf Tournament (MN) - Gopher Hills
Golf Club
[http://www.rsvpbook.com/event.php?437524]
http://www.rsvpbook.com/event.php?437524
Dystonia Awareness Week
June 1 - June 7
Tell us how we are doing. We would love to hear your thoughts about the
newsletter. Email us today at
[mailto:enewsletter@dystonia-foundation.org?subject=Feedback%20about%20eNews]
enewsletter@dystonia-foundation.org
Would you like to access the newsletter 24/7?
[http://dmrfenews.blogspot.com] dmrfenews.blogspot.com
Would you like to receive updates by text message?
Text DYSTONIA to 90999
Join us on one of our social networks:
[http://www.facebook.com/home.php?]
[http://myspace.com/thedmrf]
[http://thedmrf.ning.com/]
[http://twitter.com/dmrf]
Contact Information:
One East Wacker Drive, Suite 2810
Chicago, Illinois 60601
800.377.3978
[mailto:enewsletter@dystonia-foundation.org?subject=Questions,%20comments%20or%20concerns]
enewsletter@dystonia-foundation.org
[http://www.dystonia-foundation.org] www.dystonia-foundation.org
© 2009 DMRF
Monday, April 27, 2009
DMRF eNews - April 2009
DMRF eNews
April 2009
To ensure your receipt of the DMRF eNews, please add
enewsletter@dystonia-foundation.org to your address book.
In the news...
You may have noticed that dystonia has been in the news quite a bit
lately. What a boost for the dystonia community and our awareness building
efforts!
If you missed it, on March 31st, the Oprah Show talked about dystonia. If
you'd like to share your thoughts about what this means to you, please
visit [http://thedmrf.ning.com] http://thedmrf.ning.com.
We are also very excited about a recent radio interview on The Leonard
Lopate Show where guests Jamie Talan and Dr. Rob Weil held a thoughtful
discussion about deep brain stimulation (DBS) surgery.
[http://www.wnyc.org/shows/lopate/episodes/2009/03/31/segments/127494]
Click here to tune in and listen to the show.
Would you like to share your thoughts about what you heard? Visit
[http://thedmrf.ning.com] http://thedmrf.ning.com.
More on DBS
Attend the Deep Brain Stimulation For Dystonia Symposium
Co-sponsored by the
Dystonia Medical Research Foundation
& DBSforDystonia Bulletin Board
This event is a special meeting for adults in any stage of the deep
brain stimulation (DBS) process. The agenda was created for those who are
considering DBS as well as those who have undergone the procedure. Family
and friends are also encouraged to attend.
Topics to be addressed tentatively include:
- Update on Dystonia
- DBS: The Latest Clinical Information
- Who Is A Candidate For DBS?
- Preparing For DBS & Relaxation Techniques
- Programming
- Personal Perspectives
- Insurance & Reimbursement
- Advocacy
Registration includes the Friday evening Meet & Greet Reception, all
Saturday sessions, lunch on Saturday, and meeting materials. Registration
does not include hotel stay.
April 17-18, 2009
Meet & Greet Reception, Friday April 17 - 6:00 PM - 8:00PM
DBS Symposium, Saturday April 18 - 8:30 AM - 5:30 PM
Embassy Suites Nashville at Vanderbilt
1811 Broadway
Nashville,Tennessee 37203
615-320-8899
Registration Options:
-Register online at [http://www.rsvpbook.com/event.php?484522]
http://www.rsvpbook.com/event.php?484522
- Call DMRF at 312.755.0198
That's not all folks!
The Dystonia Medical Research Foundation is pleased to announce the
appointment of Paula Schneider to the position of Leadership Chair, serving
as an ex officio member of the Foundation’s Board of Directors.
Paula is a long-time leader and active member of the DMRF having served as
a founding member of the Media Action Group, the Public Relations Committee,
the DMRF Connecticut State Liaison, a dystonia advocate and a member of the
New York Chapter. She brings great experience and enthusiasm to this
position.
In her role as Leadership Chair, Paula will serve as the liaison between
the Board and the support network and local leaders. Paula will travel to
meet with groups and leaders to provide support to the important work they
are doing and to learn more about what resources are needed to assist local
support efforts.
Congratulations Paula!
Welcome to our 2 newest support groups
We are pleased to announce our two newest groups who are both hosting their
first meetings in April.
Jacksonville Dystonia Support Group
Monday,April 6th
Leader: Sandra Pike
Phone: 904-713-7620
E-mail: [mailto:firefighterpike@yahoo.com] firefighterpike@yahoo.com
Minnesota Dystonia Support Group
Saturday, April 4th
Leaders: Gloria, Dave and Kris Isackson
Phone: 952.949.6153
E-mail: [mailto:gisackson@mchsi.com] gisackson@mchsi.com
DMRF Insights by Janet
We are excited about the launch of our new blog, DMRF Insights by Janet.
This blog, written by Janet Hieshetter,Executive Director of the Dystonia
Medical Research Foundation will offer you an inside look into the workings
of the Foundation. For news, updates, reflections and the like, visit DMRF
Insights by Janet.
To view the blog, please visit [http://dmrfinsights.blogspot.com]
http://dmrfinsights.blogspot.com.
Kept in the loop
Would you like to be kept in the loop in real-time about Foundation news
like that mentioned above? If so, sign up today to receive updates via
text message on your cell phone.
Text DYSTONIA to 90999
Dystonia Medcial Research Foundation Free SMS Service is available on most
carriers. Standard text rates may apply.Reply STOP to stop receiving text messages. For more
information please visit: [http://www.mgive.com/a] www.mgive.com/a
Share your story
The Dystonia Medical Research Foundation extends our heartfelt thanks to
those who recently shared their thoughts and feelings about dystonia in such a public forum. Their courage and candor have done much to raise awareness about
this debilitating disorder.
We know that they are not alone. Many of you have similar stories, similar
experiences and we’d like to hear about them. We encourage you to share
your insight on our discussion board at [http://thedmrf.ning.com/]
http://thedmrf.ning.com.
We would also like to encourage those who are interested in doing something
more to help other affected individuals. If you are interested in learning
more about how to raise awareness, provide support, and advocate for
dystonia within your community,please email us at
[mailto:dystonia@dystonia-foundation.org] dystonia@dystonia-foundation.org
or call our office at 312.755.0198
The race starts here...
The Bank of America Chicago Marathon hosts thousands of runners who choose
to make their Chicago Marathon experience more meaningful by running on
behalf of a charity. These runners begin the training season with goals for
personal bests in their marathon time as well as in fundraising dollars. The
impact from every charity runner is felt around the world.
In 2008, more than 7,300 charity runners collectively raised nearly$10
million for organizations around the globe. The bar is once again set high
for the 2009 Bank of America Chicago Marathon!
If you are interested in participating in the 2009 Bank of America Chicago
Marathon as a charity runner for the DMRF, please send an email to
[mailto:enewsletter@dystonia-foundation.org?subject=I%27d%20like%20more%20information%20about%20the%20marathon]
enewsletter@dystonia-foundation.org today.
For those of you who previously contacted the Foundation about your
interest in the marathon, you will be receiving a packet of information
within the coming weeks. In the interim, if you have any questions, please
feel free to send an email to
[mailto:enewsletter@dystonia-foundation.org?subject=Marathon%20Packets]
enewsletter@dystonia-foundation.org.
The race starts here...the race starts with you...
...and continues on
- Feeling the pinch of the economy, many people are asking themselves how
they might still continue to support the Foundation with limited resources.
One way to leave your lasting legacy is through a planned gift to the
Foundation. Consider making the DMRF a beneficiary of an insurance policy
or in your will. It's a fairly simple process that will allow you to make
a tremendous difference in the lives of affected individuals.
Want more information on how to leave your lasting legacy? Email us at
[mailto:enewsletter@dystonia-foundation.org?subject=Leaving%20a%20lasting%20legacy]
enewsletter@dystonia-foundation.org
A simple act of kindness
Invite your family and friends to join us as we work to make a difference
in the lives of affected individuals. The next time you pull out your cell
phone, think about how the simple act of sending a text can fund a research
project, spur legislation, increase knowledge and connect people to
resources they desperately need.
Text DMRF to 90999 to make a $5 donation.
A one-time charge of $5 will be added to your mobile phone bill.
Standard messaging rates and additional fees may apply. All charges are
billed by and payable to your mobile service provider. Proceeds benefit the
Dystonia Medical Research Foundation. Service is available on most
carriers. You can stop receiving messages and/or recurring charges at any time by texting 'STOP' to 90999.
Turn Over A New Leaf
"Turn Over A New Leaf" and join DMRF for a special fundraising event
hosted by Macy's. It is easy to participate and a great opportunity to
raise much needed funds for the Foundation.
How does it work? Purchase $5 savings passes for
[https://dystonia.securesites.net/dystonia/pages/donate_form/189.php]
Macy's One Good Turn Shopping Event from DMRF and the Foundation keeps 100%
of the proceeds!
Date: Saturday, April 25, 2009
Place: All Macy's locations nationwide
Deadline to Order: April 17, 2009
Use your exclusive savings pass and receive 2 great offers at Macy's:
$5.00 off a one-time $15 purchase
AND
10% - 20% off savings throughout the store
Ready to get your Macy's pass?
[https://dystonia.securesites.net/dystonia/pages/donate_form/189.php] Click
here and select the Macy's One Good Turn Shopping Event in the Special
Event Section of the page.
Precious Gift...
Each one of us can make a very personal contribution and help researchers
discover more clues about this complex disorder we call dystonia by becoming
brain donors. By studying brain tissue from those who have dystonia,family
members who may or may not exhibit symptoms, and others who do not
have dystonia at all, they will have a better understanding of what goes
wrong in the brain that causes the uncontrolled movements to occur. And
more knowledge will lead to new and innovative treatment therapies and that
much closer to finding a cure! Wouldn’t that be wonderful?
To learn more about this invaluable program,please contact Martha Murphy,
Brain Bank Liaison by e-mail at [mailto:brainbank@dystonia-foundation.org]
brainbank@dystonia-foundation.org or by calling 800.377.3978 or
312.755.0198. Please make certain to provide your full legal name, your
postal mailing address, a phone number(s) where you can be reached, and your
e-mail address so that we can contact you and mail you information.
Mark Your Calendars
April 16, 2009 - Changing Keys: Billy McLaughlin and the Mysteries of
Dystonia (MN) - Broadcast Minneapolis Public Television - TPT Channel 2
April 20, 2009 - 2nd Annual Curtain Call for a Cause (NJ)
[http://www.rsvpbook.com/event.php?446364]
http://www.rsvpbook.com/event.php?446364
April 24, 2009 - Return to Margaritaville 3 (MA) - Danversport Yacht Club
More information to follow!
April 25, 2009 - Macy's One Good Turn Shopping Event (Nationwide)
May 2, 2009 - Freedom Ride for Dystonia (MD) - Old Glory Harley-Davidson
[http://freedomride4dystonia.wordpress.com]
http://freedomride4dystonia.wordpress.com
May 2, 2009 - Strike Out Dystonia Bowl-A-Thon (NY) -
AMF Wallington Lanes
To register, call Tom Stampe at 201.790.2827
or email [mailto:DMRFnyc@yahoo.com?subject=Bowl-A-Thon] DMRFnyc@yahoo.com
May 5th and 6th - Dystonia Advocacy Day
(see article below)
May 9, 2009 - Fireside Chat Dystonia Meeting (LA) - Ochsner Medical Center
Email Don LeBlanc at
[mailto:airdadone@charter.net?subject=I%27d%20like%20more%20information%20about%20the%20meeting]
airdadone@charter.net for more information.
June 1st through June 7th, 2009 - Dystonia Awareness Week (Nationwide)
August 17, 2009 - 1st Annual Minnesota Golf Tournament (MN) - Gopher Hills
Golf Club
[http://www.rsvpbook.com/event.php?437524]
http://www.rsvpbook.com/event.php?437524
Dystonia Advocacy Day
- May 5 & 6, 2009
The Dystonia Advocacy Coalition is pleased to announce Dystonia Advocacy
Day in Washington,D.C. on May 5-6, 2009. The goal of our day is to inform
our legislators about dystonia and voice how dystonia has affected our
lives. Issues that will be presented this year include but are not limited
to increased NIH funding for neurological disorders including dystonia and
patient access for effective treatments for dystonia.
The DMRF is recruiting Advocates in the following areas. If you are
interested please e-mail
[mailto:dystonia@dystonia-foundation.org?subject=Advocates]
dystonia@dystonia-foundation.org ASAP with your contact information and
brief background information on yourself and your interest in becoming an
Advocate. We are able to cover transportationand lodging expenses for one
representative from each area.
Senate
Daniel Inouye (D-HI) Appropriations Committee Chairman
Tom Harkin (D-IA) Health Subcommittee of the Appropriations Committee
Chairman
Edward Kennedy(D-MA) Health, Education, Labor, and Pensions
Committee Chairman
Michael Enzi (R-WY) Health, Education, Labor, and Pensions Committee
Ranking Member
House
Jerry Lewis(R-CA-41^st) Appropriations Committee Ranking Member
Todd Tiahrt(R-KS-4^th) Health Subcommittee of the Appropriations
Committee Ranking Member
Henry Waxman(D-CA-30^th) Energy and Commerce Committee Chairman
Nathan Deal(R-GA-9^th) Energy and Commerce Committee Health Subcommittee
Ranking Member
Anna Eshoo(D-CA-14^th)
Advocates who have participated in past events have found them to be an
incredibly rewarding and empowering experience and were proud to have
exercised their right to communicate with their elected officials.
By working together we will strengthen our voice and advance issues of
importance to our dystonia community!
* The DAC is comprised of the following Dystonia advocacy groups: Benign
Essential Blepharospasm Research Foundation (BEBRF), DySTonia, Inc.,
Dystonia Medical Research Foundation(DMRF), National Spasmodic Dysphonia
Association (NSDA), and National Spasmodic Torticollis Association (NSTA).
Stay tuned - the new issue of the Dystonia Dialogue should arrive in your
mailboxes soon!
Are you receiving duplicate mailings? If so, please email Emma at
[mailto:epinto@dystonia-foundation.org?subject=Duplicate%20Mailings]
epinto@dystonia-foundation.org to let us know.
Tell us how we are doing. We would love to hear your thoughts about the
newsletter. Email us today at
[mailto:enewsletter@dystonia-foundation.org?subject=Feedback%20about%20eNews]
enewsletter@dystonia-foundation.org
Would you like to receive updates by text message?
Text DYSTONIA to 90999.
Join us on one of our social networks:
[http://www.facebook.com/home.php?]
[http://myspace.com/thedmrf]
[http://thedmrf.ning.com/]
[http://twitter.com/dmrf]
Contact Information:
One East Wacker Drive, Suite 2810
Chicago, Illinois 60601
800.377.3978
[mailto:enewsletter@dystonia-foundation.org?subject=Questions,%20comments%20or%20concerns]
enewsletter@dystonia-foundation.org
[http://www.dystonia-foundation.org] www.dystonia-foundation.org
© 2009 DMRF
April 2009
To ensure your receipt of the DMRF eNews, please add
enewsletter@dystonia-foundation.org to your address book.
In the news...
You may have noticed that dystonia has been in the news quite a bit
lately. What a boost for the dystonia community and our awareness building
efforts!
If you missed it, on March 31st, the Oprah Show talked about dystonia. If
you'd like to share your thoughts about what this means to you, please
visit [http://thedmrf.ning.com] http://thedmrf.ning.com.
We are also very excited about a recent radio interview on The Leonard
Lopate Show where guests Jamie Talan and Dr. Rob Weil held a thoughtful
discussion about deep brain stimulation (DBS) surgery.
[http://www.wnyc.org/shows/lopate/episodes/2009/03/31/segments/127494]
Click here to tune in and listen to the show.
Would you like to share your thoughts about what you heard? Visit
[http://thedmrf.ning.com] http://thedmrf.ning.com.
More on DBS
Attend the Deep Brain Stimulation For Dystonia Symposium
Co-sponsored by the
Dystonia Medical Research Foundation
& DBSforDystonia Bulletin Board
This event is a special meeting for adults in any stage of the deep
brain stimulation (DBS) process. The agenda was created for those who are
considering DBS as well as those who have undergone the procedure. Family
and friends are also encouraged to attend.
Topics to be addressed tentatively include:
- Update on Dystonia
- DBS: The Latest Clinical Information
- Who Is A Candidate For DBS?
- Preparing For DBS & Relaxation Techniques
- Programming
- Personal Perspectives
- Insurance & Reimbursement
- Advocacy
Registration includes the Friday evening Meet & Greet Reception, all
Saturday sessions, lunch on Saturday, and meeting materials. Registration
does not include hotel stay.
April 17-18, 2009
Meet & Greet Reception, Friday April 17 - 6:00 PM - 8:00PM
DBS Symposium, Saturday April 18 - 8:30 AM - 5:30 PM
Embassy Suites Nashville at Vanderbilt
1811 Broadway
Nashville,Tennessee 37203
615-320-8899
Registration Options:
-Register online at [http://www.rsvpbook.com/event.php?484522]
http://www.rsvpbook.com/event.php?484522
- Call DMRF at 312.755.0198
That's not all folks!
The Dystonia Medical Research Foundation is pleased to announce the
appointment of Paula Schneider to the position of Leadership Chair, serving
as an ex officio member of the Foundation’s Board of Directors.
Paula is a long-time leader and active member of the DMRF having served as
a founding member of the Media Action Group, the Public Relations Committee,
the DMRF Connecticut State Liaison, a dystonia advocate and a member of the
New York Chapter. She brings great experience and enthusiasm to this
position.
In her role as Leadership Chair, Paula will serve as the liaison between
the Board and the support network and local leaders. Paula will travel to
meet with groups and leaders to provide support to the important work they
are doing and to learn more about what resources are needed to assist local
support efforts.
Congratulations Paula!
Welcome to our 2 newest support groups
We are pleased to announce our two newest groups who are both hosting their
first meetings in April.
Jacksonville Dystonia Support Group
Monday,April 6th
Leader: Sandra Pike
Phone: 904-713-7620
E-mail: [mailto:firefighterpike@yahoo.com] firefighterpike@yahoo.com
Minnesota Dystonia Support Group
Saturday, April 4th
Leaders: Gloria, Dave and Kris Isackson
Phone: 952.949.6153
E-mail: [mailto:gisackson@mchsi.com] gisackson@mchsi.com
DMRF Insights by Janet
We are excited about the launch of our new blog, DMRF Insights by Janet.
This blog, written by Janet Hieshetter,Executive Director of the Dystonia
Medical Research Foundation will offer you an inside look into the workings
of the Foundation. For news, updates, reflections and the like, visit DMRF
Insights by Janet.
To view the blog, please visit [http://dmrfinsights.blogspot.com]
http://dmrfinsights.blogspot.com.
Kept in the loop
Would you like to be kept in the loop in real-time about Foundation news
like that mentioned above? If so, sign up today to receive updates via
text message on your cell phone.
Text DYSTONIA to 90999
Dystonia Medcial Research Foundation Free SMS Service is available on most
carriers. Standard text rates may apply.Reply STOP to stop receiving text messages. For more
information please visit: [http://www.mgive.com/a] www.mgive.com/a
Share your story
The Dystonia Medical Research Foundation extends our heartfelt thanks to
those who recently shared their thoughts and feelings about dystonia in such a public forum. Their courage and candor have done much to raise awareness about
this debilitating disorder.
We know that they are not alone. Many of you have similar stories, similar
experiences and we’d like to hear about them. We encourage you to share
your insight on our discussion board at [http://thedmrf.ning.com/]
http://thedmrf.ning.com.
We would also like to encourage those who are interested in doing something
more to help other affected individuals. If you are interested in learning
more about how to raise awareness, provide support, and advocate for
dystonia within your community,please email us at
[mailto:dystonia@dystonia-foundation.org] dystonia@dystonia-foundation.org
or call our office at 312.755.0198
The race starts here...
The Bank of America Chicago Marathon hosts thousands of runners who choose
to make their Chicago Marathon experience more meaningful by running on
behalf of a charity. These runners begin the training season with goals for
personal bests in their marathon time as well as in fundraising dollars. The
impact from every charity runner is felt around the world.
In 2008, more than 7,300 charity runners collectively raised nearly$10
million for organizations around the globe. The bar is once again set high
for the 2009 Bank of America Chicago Marathon!
If you are interested in participating in the 2009 Bank of America Chicago
Marathon as a charity runner for the DMRF, please send an email to
[mailto:enewsletter@dystonia-foundation.org?subject=I%27d%20like%20more%20information%20about%20the%20marathon]
enewsletter@dystonia-foundation.org today.
For those of you who previously contacted the Foundation about your
interest in the marathon, you will be receiving a packet of information
within the coming weeks. In the interim, if you have any questions, please
feel free to send an email to
[mailto:enewsletter@dystonia-foundation.org?subject=Marathon%20Packets]
enewsletter@dystonia-foundation.org.
The race starts here...the race starts with you...
...and continues on
- Feeling the pinch of the economy, many people are asking themselves how
they might still continue to support the Foundation with limited resources.
One way to leave your lasting legacy is through a planned gift to the
Foundation. Consider making the DMRF a beneficiary of an insurance policy
or in your will. It's a fairly simple process that will allow you to make
a tremendous difference in the lives of affected individuals.
Want more information on how to leave your lasting legacy? Email us at
[mailto:enewsletter@dystonia-foundation.org?subject=Leaving%20a%20lasting%20legacy]
enewsletter@dystonia-foundation.org
A simple act of kindness
Invite your family and friends to join us as we work to make a difference
in the lives of affected individuals. The next time you pull out your cell
phone, think about how the simple act of sending a text can fund a research
project, spur legislation, increase knowledge and connect people to
resources they desperately need.
Text DMRF to 90999 to make a $5 donation.
A one-time charge of $5 will be added to your mobile phone bill.
Standard messaging rates and additional fees may apply. All charges are
billed by and payable to your mobile service provider. Proceeds benefit the
Dystonia Medical Research Foundation. Service is available on most
carriers. You can stop receiving messages and/or recurring charges at any time by texting 'STOP' to 90999.
Turn Over A New Leaf
"Turn Over A New Leaf" and join DMRF for a special fundraising event
hosted by Macy's. It is easy to participate and a great opportunity to
raise much needed funds for the Foundation.
How does it work? Purchase $5 savings passes for
[https://dystonia.securesites.net/dystonia/pages/donate_form/189.php]
Macy's One Good Turn Shopping Event from DMRF and the Foundation keeps 100%
of the proceeds!
Date: Saturday, April 25, 2009
Place: All Macy's locations nationwide
Deadline to Order: April 17, 2009
Use your exclusive savings pass and receive 2 great offers at Macy's:
$5.00 off a one-time $15 purchase
AND
10% - 20% off savings throughout the store
Ready to get your Macy's pass?
[https://dystonia.securesites.net/dystonia/pages/donate_form/189.php] Click
here and select the Macy's One Good Turn Shopping Event in the Special
Event Section of the page.
Precious Gift...
Each one of us can make a very personal contribution and help researchers
discover more clues about this complex disorder we call dystonia by becoming
brain donors. By studying brain tissue from those who have dystonia,family
members who may or may not exhibit symptoms, and others who do not
have dystonia at all, they will have a better understanding of what goes
wrong in the brain that causes the uncontrolled movements to occur. And
more knowledge will lead to new and innovative treatment therapies and that
much closer to finding a cure! Wouldn’t that be wonderful?
To learn more about this invaluable program,please contact Martha Murphy,
Brain Bank Liaison by e-mail at [mailto:brainbank@dystonia-foundation.org]
brainbank@dystonia-foundation.org or by calling 800.377.3978 or
312.755.0198. Please make certain to provide your full legal name, your
postal mailing address, a phone number(s) where you can be reached, and your
e-mail address so that we can contact you and mail you information.
Mark Your Calendars
April 16, 2009 - Changing Keys: Billy McLaughlin and the Mysteries of
Dystonia (MN) - Broadcast Minneapolis Public Television - TPT Channel 2
April 20, 2009 - 2nd Annual Curtain Call for a Cause (NJ)
[http://www.rsvpbook.com/event.php?446364]
http://www.rsvpbook.com/event.php?446364
April 24, 2009 - Return to Margaritaville 3 (MA) - Danversport Yacht Club
More information to follow!
April 25, 2009 - Macy's One Good Turn Shopping Event (Nationwide)
May 2, 2009 - Freedom Ride for Dystonia (MD) - Old Glory Harley-Davidson
[http://freedomride4dystonia.wordpress.com]
http://freedomride4dystonia.wordpress.com
May 2, 2009 - Strike Out Dystonia Bowl-A-Thon (NY) -
AMF Wallington Lanes
To register, call Tom Stampe at 201.790.2827
or email [mailto:DMRFnyc@yahoo.com?subject=Bowl-A-Thon] DMRFnyc@yahoo.com
May 5th and 6th - Dystonia Advocacy Day
(see article below)
May 9, 2009 - Fireside Chat Dystonia Meeting (LA) - Ochsner Medical Center
Email Don LeBlanc at
[mailto:airdadone@charter.net?subject=I%27d%20like%20more%20information%20about%20the%20meeting]
airdadone@charter.net for more information.
June 1st through June 7th, 2009 - Dystonia Awareness Week (Nationwide)
August 17, 2009 - 1st Annual Minnesota Golf Tournament (MN) - Gopher Hills
Golf Club
[http://www.rsvpbook.com/event.php?437524]
http://www.rsvpbook.com/event.php?437524
Dystonia Advocacy Day
- May 5 & 6, 2009
The Dystonia Advocacy Coalition is pleased to announce Dystonia Advocacy
Day in Washington,D.C. on May 5-6, 2009. The goal of our day is to inform
our legislators about dystonia and voice how dystonia has affected our
lives. Issues that will be presented this year include but are not limited
to increased NIH funding for neurological disorders including dystonia and
patient access for effective treatments for dystonia.
The DMRF is recruiting Advocates in the following areas. If you are
interested please e-mail
[mailto:dystonia@dystonia-foundation.org?subject=Advocates]
dystonia@dystonia-foundation.org ASAP with your contact information and
brief background information on yourself and your interest in becoming an
Advocate. We are able to cover transportationand lodging expenses for one
representative from each area.
Senate
Daniel Inouye (D-HI) Appropriations Committee Chairman
Tom Harkin (D-IA) Health Subcommittee of the Appropriations Committee
Chairman
Edward Kennedy(D-MA) Health, Education, Labor, and Pensions
Committee Chairman
Michael Enzi (R-WY) Health, Education, Labor, and Pensions Committee
Ranking Member
House
Jerry Lewis(R-CA-41^st) Appropriations Committee Ranking Member
Todd Tiahrt(R-KS-4^th) Health Subcommittee of the Appropriations
Committee Ranking Member
Henry Waxman(D-CA-30^th) Energy and Commerce Committee Chairman
Nathan Deal(R-GA-9^th) Energy and Commerce Committee Health Subcommittee
Ranking Member
Anna Eshoo(D-CA-14^th)
Advocates who have participated in past events have found them to be an
incredibly rewarding and empowering experience and were proud to have
exercised their right to communicate with their elected officials.
By working together we will strengthen our voice and advance issues of
importance to our dystonia community!
* The DAC is comprised of the following Dystonia advocacy groups: Benign
Essential Blepharospasm Research Foundation (BEBRF), DySTonia, Inc.,
Dystonia Medical Research Foundation(DMRF), National Spasmodic Dysphonia
Association (NSDA), and National Spasmodic Torticollis Association (NSTA).
Stay tuned - the new issue of the Dystonia Dialogue should arrive in your
mailboxes soon!
Are you receiving duplicate mailings? If so, please email Emma at
[mailto:epinto@dystonia-foundation.org?subject=Duplicate%20Mailings]
epinto@dystonia-foundation.org to let us know.
Tell us how we are doing. We would love to hear your thoughts about the
newsletter. Email us today at
[mailto:enewsletter@dystonia-foundation.org?subject=Feedback%20about%20eNews]
enewsletter@dystonia-foundation.org
Would you like to receive updates by text message?
Text DYSTONIA to 90999.
Join us on one of our social networks:
[http://www.facebook.com/home.php?]
[http://myspace.com/thedmrf]
[http://thedmrf.ning.com/]
[http://twitter.com/dmrf]
Contact Information:
One East Wacker Drive, Suite 2810
Chicago, Illinois 60601
800.377.3978
[mailto:enewsletter@dystonia-foundation.org?subject=Questions,%20comments%20or%20concerns]
enewsletter@dystonia-foundation.org
[http://www.dystonia-foundation.org] www.dystonia-foundation.org
© 2009 DMRF
DMRF eNews - March 2009
DMRF eNews
March 2009
DMRF is pleased to announce our participation in the 2009 Bank of America
Chicago Marathon Charity Program
The Bank of America Chicago Marathon hosts thousands of runners who choose
to make their Chicago Marathon experience more meaningful by running on
behalf of a charity. These runners begin the training season with goals for
personal bests in their marathon time as well as in fundraising dollars. The
impact from every charity runner is felt around the world.
In 2008, more than 7,300 charity runners collectively raised nearly$10
million for organizations around the globe. The bar is once again set high
for the 2009 Bank of America Chicago Marathon!
If you are interested in participating in the 2009 Bank of America Chicago
Marathon as a charity runner for the DMRF, please send an email to
[mailto:enewsletter@dystonia-foundation.org?subject=I%27d%20like%20more%20information%20about%20the%20marathon]
enewsletter@dystonia-foundation.org today.
Our race continues...
In January, we announced the launch of our Dollar a Day for Dystonia Campaign asking everyone to personally raise or give $365. Each dollar, each day makes a difference. From funding progressive research to sharing updates in the community to forging the paths for lifelong connections, each dollar goes a long way. Join us in our race to make a difference!
[https://mightysite2.securesites.net/www.dystonia-foundation.org/pages/donate_form/189.php] My Dollar a Day Commitment
Why not start today?
Invite your family and friends to join you in the Dollar a Day Commitment!
Ask each of them to text DMRF to 90999 to make a $5 donation. A one-time charge of $5 will be added to your mobile phone bill. Standard messaging rates and additional fees may apply. All charges are billed by and payable to your mobile service provider. Proceeds benefit the Dystonia Medical Research Foundation. Service is available on most carriers. You can unsubscribe at any time by texting 'STOP' to 90999.
See how others are joining in on the race...
The South Sound Blues Association, in collaboration with Oxford
Entertainment and Della Records, is pleased to announce the release of an
amazing new CD, "Big Blues for Little Bill." The CD is the result of
efforts by some of the Pacific Northwest's most important blues artists to
honor Little Bill Engelhart, a NW blues legend, and to benefit the Dystonia
Medical Research Foundation (DMRF), an organization dear to Bill's heart,
as his son Tony was diagnosed with generalized dystonia many years ago.
In Bill's mind this tribute is about his admiration for his son's bravery
as he deals with dystonia. Tony's response to the projected contribution
to DMRF is that the resulting research may help someone who is in worse
shape than he.
In celebration of the release of the CD three events have been planned for
March in Seattle and Tacoma. The first is on March 1 at the Seattle First
Baptist Church in the Hill in Seattle, the second on March 17 at the Triple
Door in downtown Seattle and the third on March 28 at the Broadway Center
for the Performing Arts. To learn more about these events please visit
Bill’s website at [http://www.havemusic.com/littlebill]
www.havemusic.com/littlebill
"Big Blues for Little Bill" is available for purchase by contacting Randy
Oxford at
[mailto:oxfordentertain@aol.com?subject=Order%20my%20CD%20today%21]
oxfordentertain@aol.com or at 253-973-9024. The cost is $15 plus $5 for
shipping and handling. The CD includes the 60 minute music CD, a 12 page
booklet with photos and bios of the musicians who perform on the CD, as
well as a short video interview with Little Bill viewable from most
computers.
For additional information please contact Jane Henderson at 360-832-6840
or
[mailto:jhendersonwa@earthlink.net?subject=I%27d%20like%20more%20information%20about%20the%20CD]
jhendersonwa@earthlink.net.
Don't miss this special opportunity!
Attend the Deep Brain Stimulation For Dystonia Symposium
Co-sponsored by the
Dystonia Medical Research Foundation
& DBSforDystonia Bulletin Board
This event is a special meeting for adults in any stage of the deep
brain stimulation (DBS) process. The agenda was created for those who are
considering DBS as well as those who have undergone the procedure. Family
and friends are also encouraged to attend.
Topics to be addressed tentatively include:
- Update on Dystonia
- DBS: The Latest Clinical Information
- Who Is A Candidate For DBS?
- Preparing For DBS & Relaxation Techniques
- Programming
- Personal Perspectives
- Insurance & Reimbursement
- Advocacy
Registration includes the Friday evening Meet & Greet Reception, all
Saturday sessions, lunch on Saturday, and meeting materials. Registration
does not include hotel stay.
April 17-18, 2009
Meet & Greet Reception, Friday April 17 - 6:00 PM - 8:00PM
DBS Symposium, Saturday April 18 - 8:30 AM - 5:30 PM
Embassy Suites Nashville at Vanderbilt
1811 Broadway
Nashville,Tennessee 37203
615-320-8899
Registration Options:
-Register online at [http://www.rsvpbook.com/event.php?484522]
http://www.rsvpbook.com/event.php?484522
- Call DMRF at 312.755.0198
Are you tweeting yet?
Join the Twitter craze and tweet with the DMRF today!
[http://twitter.com/dmrf]
Important clues...
Each one of us has the ability to provide vital information to researchers
who are studying the complex disorder we all know as dystonia. A tremendous
amount of knowledge can be gained through the analysis of donated brain
tissue from both dystonia-affected persons as well as from those who do not
have this disorder. If you and/or your family members are interested in
learning more about the Brain Donor Program, please e-mail
[mailto:brainbank@dystonia-foundation.org]
brainbank@dystonia-foundation.org or phone 1-800-377-3978 and make sure
to provide your full name, postal address, phone number(s), and your e-mail
address if you have one.
We will postal mail you information and follow-up to answer any questions
that you may have. There is no charge to participate and DMRF partners with
the NICHD Brain &Tissue Bank for Developmental Disorders at the University
of Maryland. They make arrangements for tissue recovery and then store and
maintain the donated tissue, making it available for study by qualified
researchers. The actual donor registration takes places through their
facility but our organization helps to facilitate the process. We realize
that this is a very personal decision, but ask that you consider learning
more about brain donation to help advance dystonia research.
Mark Your Calendars
March 20, 2009 - Unlocking the secrets of dystonia and the music of Billy
McLaughlin (MN) - Parkway Theater
[http://www.billymacmusic.com/tickets.shtml]
http://www.billymacmusic.com/tickets.shtml
March 21, 2009 - Coming Back Alive Concert Film Premiere/Release Party
(MN) - Parkway Theater
[http://www.billymacmusic.com/tickets.shtml]
http://www.billymacmusic.com/tickets.shtml
March 21, 2009 - Freedom to Walk for Dystonia Walkathon (WA) - Marysville
Pilchuck High School Stadium Track
[http://www.geocities.com/sharonstandish@ymail.com/walkathon.html]
www.geocities.com/sharonstandish@ymail.com/walkathon.html
March 26, 2009 - Dystonia Research Update presented by DMRF Science
Officer, Jan Teller, PhD
More details to follow
April 16, 2009 - Watch What Happens! When Omaha Meets New York City (NE) -
Holland Performing Arts Center
[http://www.omahaperformingarts.org/tessitura/production.aspx?perf=2971]
http://www.omahaperformingarts.org/tessitura/production.aspx?perf=2971
April 20, 2009 - 2nd Annual Curtain Call for a Cause (NJ)
[http://www.rsvpbook.com/event.php?446364]
http://www.rsvpbook.com/event.php?446364
April 24, 2009 - Return to Margaritaville 3 (MA) - Danversport Yacht Club
More information to follow!
May 2, 2009 - Freedom Ride for Dystonia (MD) - Old Glory Harley-Davidson
[http://freedomride4dystonia.wordpress.com]
http://freedomride4dystonia.wordpress.com
Dystonia Advocacy Day - May 5 & 6, 2009
The Dystonia Advocacy Coalition* invites you to participate in Dystonia
Advocacy Day in Washington, D.C.on May 5-6, 2009.
Tuesday, May 5th will feature an afternoon of Advocacy Training and
Legislative Review followed by dinner at the Hotel Palomarin Washington,
D.C.
On Wednesday, May 6th all Advocates will spend the day on Capitol Hill.
We will conclude on Wednesday by5:00 pm. In addition to sharing your
personal story you will urge NIH (National Institutes of Health) to increase
federal funding for additional medical research to find the cure and to
maintain patient access for effective treatments for dystonia. The DAC
Position Paper, Talking Points and Backgrounder will be sent to you in
advance of your trip.
REGISTRATION
There is no fee for this event but all Advocates need to cover all
transportation and lodging expenses. Dinner on Tuesday night and Breakfast
on Wednesday morning will be provided. As the deadline for the hotel rooms
is March 30, 2009 we ask that you register with DMRF no later than Friday,
March 27.
If you would like to attend, please send an email to dystonia@dystonia-foundation.org and include Advocacy Day in the subject line. You will be sent a registration form to complete. For additional information or questions, please phone the DMRF National Office at 888.346.3673 or locally contact Sally Presti at 301.627.1657.
* The DAC is comprised of the following Dystonia advocacy groups: Benign
Essential Blepharospasm Research Foundation (BEBRF), DySTonia, Inc.,
Dystonia Medical Research Foundation(DMRF), National Spasmodic Dysphonia
Association (NSDA), and National Spasmodic Torticollis Association (NSTA).
Stay tuned - the new issue of the Dystonia Dialogue should arrive in your
mailboxes soon!
Are you receiving duplicate mailings? If so, please email Emma at epinto@dystonia-foundation.org to let us know.
Tell us how we are doing. We would love to hear your thoughts about the
newsletter. Email us today at
[mailto:enewsletter@dystonia-foundation.org?subject=Feedback%20about%20eNews]
enewsletter@dystonia-foundation.org
Would you like to receive updates by text message?
Text DYSTONIA to 90999.
Contact Information
One East Wacker Drive, Suite 2810
Chicago, Illinois 60601
800.377.3978
[mailto:enewsletter@dystonia-foundation.org?subject=Questions,%20comments%20or%20concerns]
enewsletter@dystonia-foundation.org
[http://www.dystonia-foundation.org] www.dystonia-foundation.org
© 2008 DMRF
March 2009
DMRF is pleased to announce our participation in the 2009 Bank of America
Chicago Marathon Charity Program
The Bank of America Chicago Marathon hosts thousands of runners who choose
to make their Chicago Marathon experience more meaningful by running on
behalf of a charity. These runners begin the training season with goals for
personal bests in their marathon time as well as in fundraising dollars. The
impact from every charity runner is felt around the world.
In 2008, more than 7,300 charity runners collectively raised nearly$10
million for organizations around the globe. The bar is once again set high
for the 2009 Bank of America Chicago Marathon!
If you are interested in participating in the 2009 Bank of America Chicago
Marathon as a charity runner for the DMRF, please send an email to
[mailto:enewsletter@dystonia-foundation.org?subject=I%27d%20like%20more%20information%20about%20the%20marathon]
enewsletter@dystonia-foundation.org today.
Our race continues...
In January, we announced the launch of our Dollar a Day for Dystonia Campaign asking everyone to personally raise or give $365. Each dollar, each day makes a difference. From funding progressive research to sharing updates in the community to forging the paths for lifelong connections, each dollar goes a long way. Join us in our race to make a difference!
[https://mightysite2.securesites.net/www.dystonia-foundation.org/pages/donate_form/189.php] My Dollar a Day Commitment
Why not start today?
Invite your family and friends to join you in the Dollar a Day Commitment!
Ask each of them to text DMRF to 90999 to make a $5 donation. A one-time charge of $5 will be added to your mobile phone bill. Standard messaging rates and additional fees may apply. All charges are billed by and payable to your mobile service provider. Proceeds benefit the Dystonia Medical Research Foundation. Service is available on most carriers. You can unsubscribe at any time by texting 'STOP' to 90999.
See how others are joining in on the race...
The South Sound Blues Association, in collaboration with Oxford
Entertainment and Della Records, is pleased to announce the release of an
amazing new CD, "Big Blues for Little Bill." The CD is the result of
efforts by some of the Pacific Northwest's most important blues artists to
honor Little Bill Engelhart, a NW blues legend, and to benefit the Dystonia
Medical Research Foundation (DMRF), an organization dear to Bill's heart,
as his son Tony was diagnosed with generalized dystonia many years ago.
In Bill's mind this tribute is about his admiration for his son's bravery
as he deals with dystonia. Tony's response to the projected contribution
to DMRF is that the resulting research may help someone who is in worse
shape than he.
In celebration of the release of the CD three events have been planned for
March in Seattle and Tacoma. The first is on March 1 at the Seattle First
Baptist Church in the Hill in Seattle, the second on March 17 at the Triple
Door in downtown Seattle and the third on March 28 at the Broadway Center
for the Performing Arts. To learn more about these events please visit
Bill’s website at [http://www.havemusic.com/littlebill]
www.havemusic.com/littlebill
"Big Blues for Little Bill" is available for purchase by contacting Randy
Oxford at
[mailto:oxfordentertain@aol.com?subject=Order%20my%20CD%20today%21]
oxfordentertain@aol.com or at 253-973-9024. The cost is $15 plus $5 for
shipping and handling. The CD includes the 60 minute music CD, a 12 page
booklet with photos and bios of the musicians who perform on the CD, as
well as a short video interview with Little Bill viewable from most
computers.
For additional information please contact Jane Henderson at 360-832-6840
or
[mailto:jhendersonwa@earthlink.net?subject=I%27d%20like%20more%20information%20about%20the%20CD]
jhendersonwa@earthlink.net.
Don't miss this special opportunity!
Attend the Deep Brain Stimulation For Dystonia Symposium
Co-sponsored by the
Dystonia Medical Research Foundation
& DBSforDystonia Bulletin Board
This event is a special meeting for adults in any stage of the deep
brain stimulation (DBS) process. The agenda was created for those who are
considering DBS as well as those who have undergone the procedure. Family
and friends are also encouraged to attend.
Topics to be addressed tentatively include:
- Update on Dystonia
- DBS: The Latest Clinical Information
- Who Is A Candidate For DBS?
- Preparing For DBS & Relaxation Techniques
- Programming
- Personal Perspectives
- Insurance & Reimbursement
- Advocacy
Registration includes the Friday evening Meet & Greet Reception, all
Saturday sessions, lunch on Saturday, and meeting materials. Registration
does not include hotel stay.
April 17-18, 2009
Meet & Greet Reception, Friday April 17 - 6:00 PM - 8:00PM
DBS Symposium, Saturday April 18 - 8:30 AM - 5:30 PM
Embassy Suites Nashville at Vanderbilt
1811 Broadway
Nashville,Tennessee 37203
615-320-8899
Registration Options:
-Register online at [http://www.rsvpbook.com/event.php?484522]
http://www.rsvpbook.com/event.php?484522
- Call DMRF at 312.755.0198
Are you tweeting yet?
Join the Twitter craze and tweet with the DMRF today!
[http://twitter.com/dmrf]
Important clues...
Each one of us has the ability to provide vital information to researchers
who are studying the complex disorder we all know as dystonia. A tremendous
amount of knowledge can be gained through the analysis of donated brain
tissue from both dystonia-affected persons as well as from those who do not
have this disorder. If you and/or your family members are interested in
learning more about the Brain Donor Program, please e-mail
[mailto:brainbank@dystonia-foundation.org]
brainbank@dystonia-foundation.org or phone 1-800-377-3978 and make sure
to provide your full name, postal address, phone number(s), and your e-mail
address if you have one.
We will postal mail you information and follow-up to answer any questions
that you may have. There is no charge to participate and DMRF partners with
the NICHD Brain &Tissue Bank for Developmental Disorders at the University
of Maryland. They make arrangements for tissue recovery and then store and
maintain the donated tissue, making it available for study by qualified
researchers. The actual donor registration takes places through their
facility but our organization helps to facilitate the process. We realize
that this is a very personal decision, but ask that you consider learning
more about brain donation to help advance dystonia research.
Mark Your Calendars
March 20, 2009 - Unlocking the secrets of dystonia and the music of Billy
McLaughlin (MN) - Parkway Theater
[http://www.billymacmusic.com/tickets.shtml]
http://www.billymacmusic.com/tickets.shtml
March 21, 2009 - Coming Back Alive Concert Film Premiere/Release Party
(MN) - Parkway Theater
[http://www.billymacmusic.com/tickets.shtml]
http://www.billymacmusic.com/tickets.shtml
March 21, 2009 - Freedom to Walk for Dystonia Walkathon (WA) - Marysville
Pilchuck High School Stadium Track
[http://www.geocities.com/sharonstandish@ymail.com/walkathon.html]
www.geocities.com/sharonstandish@ymail.com/walkathon.html
March 26, 2009 - Dystonia Research Update presented by DMRF Science
Officer, Jan Teller, PhD
More details to follow
April 16, 2009 - Watch What Happens! When Omaha Meets New York City (NE) -
Holland Performing Arts Center
[http://www.omahaperformingarts.org/tessitura/production.aspx?perf=2971]
http://www.omahaperformingarts.org/tessitura/production.aspx?perf=2971
April 20, 2009 - 2nd Annual Curtain Call for a Cause (NJ)
[http://www.rsvpbook.com/event.php?446364]
http://www.rsvpbook.com/event.php?446364
April 24, 2009 - Return to Margaritaville 3 (MA) - Danversport Yacht Club
More information to follow!
May 2, 2009 - Freedom Ride for Dystonia (MD) - Old Glory Harley-Davidson
[http://freedomride4dystonia.wordpress.com]
http://freedomride4dystonia.wordpress.com
Dystonia Advocacy Day - May 5 & 6, 2009
The Dystonia Advocacy Coalition* invites you to participate in Dystonia
Advocacy Day in Washington, D.C.on May 5-6, 2009.
Tuesday, May 5th will feature an afternoon of Advocacy Training and
Legislative Review followed by dinner at the Hotel Palomarin Washington,
D.C.
On Wednesday, May 6th all Advocates will spend the day on Capitol Hill.
We will conclude on Wednesday by5:00 pm. In addition to sharing your
personal story you will urge NIH (National Institutes of Health) to increase
federal funding for additional medical research to find the cure and to
maintain patient access for effective treatments for dystonia. The DAC
Position Paper, Talking Points and Backgrounder will be sent to you in
advance of your trip.
REGISTRATION
There is no fee for this event but all Advocates need to cover all
transportation and lodging expenses. Dinner on Tuesday night and Breakfast
on Wednesday morning will be provided. As the deadline for the hotel rooms
is March 30, 2009 we ask that you register with DMRF no later than Friday,
March 27.
If you would like to attend, please send an email to dystonia@dystonia-foundation.org and include Advocacy Day in the subject line. You will be sent a registration form to complete. For additional information or questions, please phone the DMRF National Office at 888.346.3673 or locally contact Sally Presti at 301.627.1657.
* The DAC is comprised of the following Dystonia advocacy groups: Benign
Essential Blepharospasm Research Foundation (BEBRF), DySTonia, Inc.,
Dystonia Medical Research Foundation(DMRF), National Spasmodic Dysphonia
Association (NSDA), and National Spasmodic Torticollis Association (NSTA).
Stay tuned - the new issue of the Dystonia Dialogue should arrive in your
mailboxes soon!
Are you receiving duplicate mailings? If so, please email Emma at epinto@dystonia-foundation.org to let us know.
Tell us how we are doing. We would love to hear your thoughts about the
newsletter. Email us today at
[mailto:enewsletter@dystonia-foundation.org?subject=Feedback%20about%20eNews]
enewsletter@dystonia-foundation.org
Would you like to receive updates by text message?
Text DYSTONIA to 90999.
Contact Information
One East Wacker Drive, Suite 2810
Chicago, Illinois 60601
800.377.3978
[mailto:enewsletter@dystonia-foundation.org?subject=Questions,%20comments%20or%20concerns]
enewsletter@dystonia-foundation.org
[http://www.dystonia-foundation.org] www.dystonia-foundation.org
© 2008 DMRF
Subscribe to:
Posts (Atom)
Posts
