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
Monday, April 27, 2009
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
DMRF eNews - February 2009
DMRF eNews
February 2009
Genetic Research Leads to New Discovery
A study led by Laurie Ozelius, PhD at Mount Sinai School of Medicine has
identified a gene associated with the development of primary torsion
dystonia, also known as DYT6 dystonia. With funding provided by the
Dystonia Medical Research Foundation (DMRF),Dr. Ozelius and her colleagues
have found that mutations in the THAP1 gene cause DYT6 dystonia in
Amish-Mennonite families, as well as in other ethnic groups.
Since the pathogenic mechanisms of primary torsion dystonias are very
poorly understood any new information about genetic causes of these diseases
is desperately needed to facilitate new studies toward the understanding of
those mechanisms. The newly discovered DYT6 gene and protein can now be used
as drug discovery targets.
“Primary torsion dystonia are rare and devastating diseases,” explains
the Foundation’s Science Office, Dr. Jan Teller. “This is the second
gene identified for this type of dystonia. Its discovery will greatly
contribute to our knowledge about molecular mechanism of all
the dystonias.”
“We are greatly excited about Dr. Ozelius’s findings, as they will help
us to better understand the many different factors responsible for this
puzzling and disabling disorder,” says Dr. Mahlon DeLong,
Scientific Director of the Foundation. “Dr. Ozelius has been a pioneer in
genetic research on dystonia and we are grateful for her unwavering
commitment to this and the broader dystonia community.”
“I am grateful to the Foundation for their support of this research,”
adds Dr. Ozelius. “The DMRF has supported gene identification studies
throughout its history and has been a leader in recognizing that
these studies represent an important first step leading to molecular
insights into the disease.”
Let's not stop here!
None of this would have been possible without your support!
In January, we announced the launch of our Dollar a Day for Dystonia
Campaign asking everyone to personally raise or give $365.
Consider making a commitment to your own health and well being as well as
to research. We've come so far but still have a long way to go.
If you think about it, $1 a day is a sacrifice that many of us can achieve.
Forgo that morning latte. Walk to work instead of driving your car. Pack
your lunch. Whatever you decide to do, know that through your sacrifice,
this goal is achievable. While we know that this amount is not feasible for
everyone, any amount is acceptable from $3.65 to $3,650!
Make your commitment to DMRF and to research. As you have read, we are
making headway. Are you up to the challenge?
[https://mightysite2.securesites.net/www.dystonia-foundation.org/pages/donate_form/189.php]
My Dollar a Day Commitment
Looking for an easy way to start making a difference with the Dollar A Day
for Dystonia campaign?
Text DMRF to 90999 today
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.
Bringing Science to Life - the Discovery of DYT1
You have just heard about the identification of the DYT6 gene. Hear
from Laurie Ozelius, PhD about her work with fellow investigator
Xandra Breakfield, PhD to identify the DYT1 gene. This gene is associated
with early onset generalized dystonia and has become a cornerstone in
dystonia research.
[http://www.dystonia-foundation.org/pages/finding_the_dyt1_gene/511.php]
We welcome your feedback. If you have any questions, comments or
suggestions, please email them to
[mailto:enewsletter@dystonia-foundation.org?subject=Bringing%20Science%20to%20Life]
enewsletter@dystonia-foundation.org.
Stay Tuned: DBS Reunion in April
Deep Brain Stimulation for Dystonia Symposium
April 17-18, 2009
Nashville, Tennessee
Co-sponsored by the
Dystonia Medical Research Foundation & DBSforDystonia Bulletin Board
Meeting Information
The Deep Brain Stimulation for Dystonia Symposium will take place at the
Embassy Suites Nashville at Vanderbilt in Nashville, Tennessee,Friday April
17 and Saturday April 18, 2009.
Registration Fees
Before March 21 - $50 per person
After March 21 - $75 per person
Register online today at
[http://www.rsvpbook.com/event.php?484522]
http://www.rsvpbook.com/event.php?484522
Come join us online!
The DMRF is excited about our presence on the online social network scene.
Stop by and check us out!
[http://www.youtube.com/user/cemiwire]
[http://twitter.com/dmrf]
[http://myspace.com/thedmrf]
[http://thedmrf.ning.com/]
Go-Go Motorized Scooter
DMRF was recently contacted by Chris Hill of NJ whose father passed away
this past July. His Father used a Go-Go Brand Motorized Scooter and Chris
would like to donate it another dystonia-affected individual. Chris
mentioned that he knows that his Father would be happy to know that he
is helping another individual with dystonia improve their lifestyle with
this scooter.
If you are interested please contact Chris directly at
[mailto:CHill@hilmanrollers.com?subject=I%27d%20like%20more%20information%20about%20the%20scooter]
CHill@hilmanrollers.com
Lead Us Closer to a Cure
Contact us today to find out what is involved in becoming a registered
brain donor. The study of brain tissue from both those who have dystonia,
and those who are not affected, provides precious and unique information to
dystonia researchers. This leads to a better understanding of this complex
disorder, to the development of new and innovative treatment therapies, and
that much closer to a cure. DMRF partners with the NICHD Brain & Tissue
Bank at the University of Maryland and those wishing to become brain donors
register through them. There is no cost to participate to either to
the donor or his/her family.
For more information, please contact Martha Murphy, Brain Bank Liaison at
[mailto:brainbank@dystonia-foundation.org]
brainbank@dystonia-foundation.org or phone 800.377.3978.
Please make sure that you provide your full legal name, postal mailing
address, phone number(s), and your e-mail address if you have one so that we
can communicate with you and send you information.
Calling Persons with OMD
The Oromandibular Dystonia (OMD) Network is re-energized and looking
forward to a very productive and supportive 2009. If you have OMD and would
like to join this informal networking group please contact group leader
Larry Stahl by phone at 860-233-1965 or by e-mail at
[mailto:artscifi2@sbcglobal.net] artscifi2@sbcglobal.net
The network provides guidance,support, education and one-on-one help via
computer, phone, and mail to others with OMD. We welcome you to share
experiences and work to improve the quality of life for persons with one of
the rarest forms of dystonia.
Mark Your Calendars
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
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)
More information to follow!
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. The goal of this day is
to inform our legislators about dystonia and how it has affected our lives.
To register for Advocacy Day or receive more information please e-mail
[mailto:jmolski@dystonia-foundation.org?subject=Advocacy%20Day]
jmolski@dystonia-foundation.org or phone 888-346-3673.
* 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).
From all of us at DMRF, Happy Valentine's Day!
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
February 2009
Genetic Research Leads to New Discovery
A study led by Laurie Ozelius, PhD at Mount Sinai School of Medicine has
identified a gene associated with the development of primary torsion
dystonia, also known as DYT6 dystonia. With funding provided by the
Dystonia Medical Research Foundation (DMRF),Dr. Ozelius and her colleagues
have found that mutations in the THAP1 gene cause DYT6 dystonia in
Amish-Mennonite families, as well as in other ethnic groups.
Since the pathogenic mechanisms of primary torsion dystonias are very
poorly understood any new information about genetic causes of these diseases
is desperately needed to facilitate new studies toward the understanding of
those mechanisms. The newly discovered DYT6 gene and protein can now be used
as drug discovery targets.
“Primary torsion dystonia are rare and devastating diseases,” explains
the Foundation’s Science Office, Dr. Jan Teller. “This is the second
gene identified for this type of dystonia. Its discovery will greatly
contribute to our knowledge about molecular mechanism of all
the dystonias.”
“We are greatly excited about Dr. Ozelius’s findings, as they will help
us to better understand the many different factors responsible for this
puzzling and disabling disorder,” says Dr. Mahlon DeLong,
Scientific Director of the Foundation. “Dr. Ozelius has been a pioneer in
genetic research on dystonia and we are grateful for her unwavering
commitment to this and the broader dystonia community.”
“I am grateful to the Foundation for their support of this research,”
adds Dr. Ozelius. “The DMRF has supported gene identification studies
throughout its history and has been a leader in recognizing that
these studies represent an important first step leading to molecular
insights into the disease.”
Let's not stop here!
None of this would have been possible without your support!
In January, we announced the launch of our Dollar a Day for Dystonia
Campaign asking everyone to personally raise or give $365.
Consider making a commitment to your own health and well being as well as
to research. We've come so far but still have a long way to go.
If you think about it, $1 a day is a sacrifice that many of us can achieve.
Forgo that morning latte. Walk to work instead of driving your car. Pack
your lunch. Whatever you decide to do, know that through your sacrifice,
this goal is achievable. While we know that this amount is not feasible for
everyone, any amount is acceptable from $3.65 to $3,650!
Make your commitment to DMRF and to research. As you have read, we are
making headway. Are you up to the challenge?
[https://mightysite2.securesites.net/www.dystonia-foundation.org/pages/donate_form/189.php]
My Dollar a Day Commitment
Looking for an easy way to start making a difference with the Dollar A Day
for Dystonia campaign?
Text DMRF to 90999 today
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.
Bringing Science to Life - the Discovery of DYT1
You have just heard about the identification of the DYT6 gene. Hear
from Laurie Ozelius, PhD about her work with fellow investigator
Xandra Breakfield, PhD to identify the DYT1 gene. This gene is associated
with early onset generalized dystonia and has become a cornerstone in
dystonia research.
[http://www.dystonia-foundation.org/pages/finding_the_dyt1_gene/511.php]
We welcome your feedback. If you have any questions, comments or
suggestions, please email them to
[mailto:enewsletter@dystonia-foundation.org?subject=Bringing%20Science%20to%20Life]
enewsletter@dystonia-foundation.org.
Stay Tuned: DBS Reunion in April
Deep Brain Stimulation for Dystonia Symposium
April 17-18, 2009
Nashville, Tennessee
Co-sponsored by the
Dystonia Medical Research Foundation & DBSforDystonia Bulletin Board
Meeting Information
The Deep Brain Stimulation for Dystonia Symposium will take place at the
Embassy Suites Nashville at Vanderbilt in Nashville, Tennessee,Friday April
17 and Saturday April 18, 2009.
Registration Fees
Before March 21 - $50 per person
After March 21 - $75 per person
Register online today at
[http://www.rsvpbook.com/event.php?484522]
http://www.rsvpbook.com/event.php?484522
Come join us online!
The DMRF is excited about our presence on the online social network scene.
Stop by and check us out!
[http://www.youtube.com/user/cemiwire]
[http://twitter.com/dmrf]
[http://myspace.com/thedmrf]
[http://thedmrf.ning.com/]
Go-Go Motorized Scooter
DMRF was recently contacted by Chris Hill of NJ whose father passed away
this past July. His Father used a Go-Go Brand Motorized Scooter and Chris
would like to donate it another dystonia-affected individual. Chris
mentioned that he knows that his Father would be happy to know that he
is helping another individual with dystonia improve their lifestyle with
this scooter.
If you are interested please contact Chris directly at
[mailto:CHill@hilmanrollers.com?subject=I%27d%20like%20more%20information%20about%20the%20scooter]
CHill@hilmanrollers.com
Lead Us Closer to a Cure
Contact us today to find out what is involved in becoming a registered
brain donor. The study of brain tissue from both those who have dystonia,
and those who are not affected, provides precious and unique information to
dystonia researchers. This leads to a better understanding of this complex
disorder, to the development of new and innovative treatment therapies, and
that much closer to a cure. DMRF partners with the NICHD Brain & Tissue
Bank at the University of Maryland and those wishing to become brain donors
register through them. There is no cost to participate to either to
the donor or his/her family.
For more information, please contact Martha Murphy, Brain Bank Liaison at
[mailto:brainbank@dystonia-foundation.org]
brainbank@dystonia-foundation.org or phone 800.377.3978.
Please make sure that you provide your full legal name, postal mailing
address, phone number(s), and your e-mail address if you have one so that we
can communicate with you and send you information.
Calling Persons with OMD
The Oromandibular Dystonia (OMD) Network is re-energized and looking
forward to a very productive and supportive 2009. If you have OMD and would
like to join this informal networking group please contact group leader
Larry Stahl by phone at 860-233-1965 or by e-mail at
[mailto:artscifi2@sbcglobal.net] artscifi2@sbcglobal.net
The network provides guidance,support, education and one-on-one help via
computer, phone, and mail to others with OMD. We welcome you to share
experiences and work to improve the quality of life for persons with one of
the rarest forms of dystonia.
Mark Your Calendars
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
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)
More information to follow!
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. The goal of this day is
to inform our legislators about dystonia and how it has affected our lives.
To register for Advocacy Day or receive more information please e-mail
[mailto:jmolski@dystonia-foundation.org?subject=Advocacy%20Day]
jmolski@dystonia-foundation.org or phone 888-346-3673.
* 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).
From all of us at DMRF, Happy Valentine's Day!
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
DMRF eNews - January 2009
DMRF eNews
January 2009
From all of us at the
Dystonia Medical Research Foundation,
Happy New Year!
CELEBRATE NEW YEAR’S WITH DMRF!
Help DMRF ring in the New Year and bring in a Cure for Dystonia. In 2009
we are challenging each of our members to participate in our Dollar a Day
for Dystonia Campaign and personally raise or give $365.
Start year 2009 off right and make a commitment to your own health and well
being by actively making a difference. If you think about it, $1 a day is a
sacrifice that many of us can achieve. By forgoing that latte,walking to
work instead of driving your car, purchasing no name products every once in
a while, this goal is achievable. Throughout the year we will share
creative ideas from our members on how they are raising this money. Set
aside a “Cure Box” and collect your loose change in it. While we
know that this amount is not feasible for everyone, any amount is acceptable
from$3.65 to $3,650! Look for more information on the Dollar a Day Campaign
in February, 2009.
Make your commitment to DMRF your New Year’s Resolution! Up to the
challenge? Let us know at
[mailto:dystonia@dystonia-foundation.org?subject=Up%20to%20the%20challenge?]
dystonia@dystonia-foundation.org.
Looking for an easy way to start making a difference with the Dollar A Day
for Dystonia campaign?
Text DMRF to 90999 today
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.
Stay Tuned: DBS Reunion in April
Deep Brain Stimulation for Dystonia Symposium
April 17-18, 2009
Nashville, Tennessee
Co-sponsored by the
Dystonia Medical Research Foundation & DBSforDystonia Bulletin Board
Meeting Information
The Deep Brain Stimulation for Dystonia Symposium will take place at the
Embassy Suites Nashville at Vanderbilt in Nashville, Tennessee,Friday April
17 and Saturday April 18, 2009.
Registration Fees
Before March 21 - $50 per person
After March 21 - $75 per person
Stay tuned for more information to come your way soon!
Join us online. The DMRF is excited about our presence on the online
social network scene. Stop by and check us out!
[http://www.youtube.com/user/cemiwire]
-
[http://twitter.com/dmrf]
[http://myspace.com/thedmrf]
[http://thedmrf.ning.com/]
Bringing Science to Life - the Discovery of DYT1
In the next installment of our Bringing Science to Life: Dystonia Research
and Treatments series, Jonathan Mink, MD, PhD speaks candidly about
dystonia treatments, research, and the role of the DMRF.
[http://www.dystonia-foundation.org/pages/exciting_ideas___substantial_hope/516.php]
Haven't seen the first clip in our Bringing Science to Life Series?
Here's another chance to sit in on a conversation between investigators
Xandra Breakefield, PhD and Laurie Ozelius, PhD as they reminisce about
their efforts to identify the DYT1 gene. This gene is associated with early
onset generalized dystonia and has become a cornerstone in dystonia research.
[http://www.dystonia-foundation.org/pages/finding_the_dyt1_gene/511.php]
We welcome your feedback about this series. If you have any questions,
comments or suggestions, please email them to
[mailto:enewsletter@dystonia-foundation.org?subject=Bringing%20Science%20to%20Life]
enewsletter@dystonia-foundation.org.
DMRF Note Cards on Sale
Use these handy little note cards as thank-yous for your holiday gifts or
to wish loved ones a Happy New Year! These attractive blank cards feature
the artwork of DMRF member Neil Marcus and provide information about the
DMRF. A package of 5 cards and envelopes is now on sale for $10.00. To
order please contact the national office by phone at888-346-3673 or e-mail
at [mailto:dystonia@dystonia-foundation.org]
dystonia@dystonia-foundation.org
A Precious Gift
YOU can make a difference in helping to advance crucial dystonia research
by signing up today to become a brain donor. DMRF partners with the NICHD
Brain & Tissue Bank for Developmental Disorders at the University of
Maryland and researchers need both dystonia-affected persons as well as
those who do not have dystonia to participate. There is no charge involved.
For more information, please contact Martha Murphy, Brain Bank Liaison at
[mailto:brainbank@dystonia-foundation.org?subject=I%27d%20like%20more%20information]
brainbank@dystonia-foundation.org or call1-800-377-3978 and please be
certain to provide your full name,postal mailing address, phone number(s)
where you can be reached, and an e-mail address if you have one so that we
can get in touch with you and mail you information.
Mark Your Calendars
JOIN US IN JANUARY
Knowledge is power. That’s why we invite you to empower yourself and
learn about dystonia and your treatment options. Our informative and
interactive sessions will provide you with a current overview of dystonia
and treatment options and help you gain a better understanding of research
underway. Ample time will be available for networking with other affected
individuals.
Seattle, Washington Dystonia Community Education Forum
Saturday, January 10, 2009
To register: [http://www.rsvpbook.com/event.php?489445]
http://www.rsvpbook.com/event.php?489445
Dallas/Ft. Worth, Texas Dystonia Community Education Meeting
Saturday, January 24, 2009
To register: [http://www.rsvpbook.com/event.php?428928]
http://www.rsvpbook.com/event.php?428928
Hudson Valley, NewYork Dystonia Community Education Meeting
Saturday, January 24, 2009
To register: Contact Cindy Miller at845-331-5165, extension 1143 or
at [mailto:nygal1929@gmail.com?subject=DMRF%20Forum] nygal1929@gmail.com
Jacksonville, Florida Dystonia Community Education Meeting
Saturday, January 31, 2009
To register: Contact DMRF at 888-346-3673or
at [mailto:dystonia@dystonia-foundation.org?subject=DMRF%20Forum]
dystonia@dystonia-foundation.org
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. The goal of this day is
to inform our legislators about dystonia and how it has affected our lives.
To register for Advocacy Day or receive more information please e-mail
[mailto:jmolski@dystonia-foundation.org?subject=Advocacy%20Day]
jmolski@dystonia-foundation.org or phone 888-346-3673.
* 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).
From all of us at DMRF, Happy New Year!
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
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
January 2009
From all of us at the
Dystonia Medical Research Foundation,
Happy New Year!
CELEBRATE NEW YEAR’S WITH DMRF!
Help DMRF ring in the New Year and bring in a Cure for Dystonia. In 2009
we are challenging each of our members to participate in our Dollar a Day
for Dystonia Campaign and personally raise or give $365.
Start year 2009 off right and make a commitment to your own health and well
being by actively making a difference. If you think about it, $1 a day is a
sacrifice that many of us can achieve. By forgoing that latte,walking to
work instead of driving your car, purchasing no name products every once in
a while, this goal is achievable. Throughout the year we will share
creative ideas from our members on how they are raising this money. Set
aside a “Cure Box” and collect your loose change in it. While we
know that this amount is not feasible for everyone, any amount is acceptable
from$3.65 to $3,650! Look for more information on the Dollar a Day Campaign
in February, 2009.
Make your commitment to DMRF your New Year’s Resolution! Up to the
challenge? Let us know at
[mailto:dystonia@dystonia-foundation.org?subject=Up%20to%20the%20challenge?]
dystonia@dystonia-foundation.org.
Looking for an easy way to start making a difference with the Dollar A Day
for Dystonia campaign?
Text DMRF to 90999 today
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.
Stay Tuned: DBS Reunion in April
Deep Brain Stimulation for Dystonia Symposium
April 17-18, 2009
Nashville, Tennessee
Co-sponsored by the
Dystonia Medical Research Foundation & DBSforDystonia Bulletin Board
Meeting Information
The Deep Brain Stimulation for Dystonia Symposium will take place at the
Embassy Suites Nashville at Vanderbilt in Nashville, Tennessee,Friday April
17 and Saturday April 18, 2009.
Registration Fees
Before March 21 - $50 per person
After March 21 - $75 per person
Stay tuned for more information to come your way soon!
Join us online. The DMRF is excited about our presence on the online
social network scene. Stop by and check us out!
[http://www.youtube.com/user/cemiwire]
-
[http://twitter.com/dmrf]
[http://myspace.com/thedmrf]
[http://thedmrf.ning.com/]
Bringing Science to Life - the Discovery of DYT1
In the next installment of our Bringing Science to Life: Dystonia Research
and Treatments series, Jonathan Mink, MD, PhD speaks candidly about
dystonia treatments, research, and the role of the DMRF.
[http://www.dystonia-foundation.org/pages/exciting_ideas___substantial_hope/516.php]
Haven't seen the first clip in our Bringing Science to Life Series?
Here's another chance to sit in on a conversation between investigators
Xandra Breakefield, PhD and Laurie Ozelius, PhD as they reminisce about
their efforts to identify the DYT1 gene. This gene is associated with early
onset generalized dystonia and has become a cornerstone in dystonia research.
[http://www.dystonia-foundation.org/pages/finding_the_dyt1_gene/511.php]
We welcome your feedback about this series. If you have any questions,
comments or suggestions, please email them to
[mailto:enewsletter@dystonia-foundation.org?subject=Bringing%20Science%20to%20Life]
enewsletter@dystonia-foundation.org.
DMRF Note Cards on Sale
Use these handy little note cards as thank-yous for your holiday gifts or
to wish loved ones a Happy New Year! These attractive blank cards feature
the artwork of DMRF member Neil Marcus and provide information about the
DMRF. A package of 5 cards and envelopes is now on sale for $10.00. To
order please contact the national office by phone at888-346-3673 or e-mail
at [mailto:dystonia@dystonia-foundation.org]
dystonia@dystonia-foundation.org
A Precious Gift
YOU can make a difference in helping to advance crucial dystonia research
by signing up today to become a brain donor. DMRF partners with the NICHD
Brain & Tissue Bank for Developmental Disorders at the University of
Maryland and researchers need both dystonia-affected persons as well as
those who do not have dystonia to participate. There is no charge involved.
For more information, please contact Martha Murphy, Brain Bank Liaison at
[mailto:brainbank@dystonia-foundation.org?subject=I%27d%20like%20more%20information]
brainbank@dystonia-foundation.org or call1-800-377-3978 and please be
certain to provide your full name,postal mailing address, phone number(s)
where you can be reached, and an e-mail address if you have one so that we
can get in touch with you and mail you information.
Mark Your Calendars
JOIN US IN JANUARY
Knowledge is power. That’s why we invite you to empower yourself and
learn about dystonia and your treatment options. Our informative and
interactive sessions will provide you with a current overview of dystonia
and treatment options and help you gain a better understanding of research
underway. Ample time will be available for networking with other affected
individuals.
Seattle, Washington Dystonia Community Education Forum
Saturday, January 10, 2009
To register: [http://www.rsvpbook.com/event.php?489445]
http://www.rsvpbook.com/event.php?489445
Dallas/Ft. Worth, Texas Dystonia Community Education Meeting
Saturday, January 24, 2009
To register: [http://www.rsvpbook.com/event.php?428928]
http://www.rsvpbook.com/event.php?428928
Hudson Valley, NewYork Dystonia Community Education Meeting
Saturday, January 24, 2009
To register: Contact Cindy Miller at845-331-5165, extension 1143 or
at [mailto:nygal1929@gmail.com?subject=DMRF%20Forum] nygal1929@gmail.com
Jacksonville, Florida Dystonia Community Education Meeting
Saturday, January 31, 2009
To register: Contact DMRF at 888-346-3673or
at [mailto:dystonia@dystonia-foundation.org?subject=DMRF%20Forum]
dystonia@dystonia-foundation.org
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. The goal of this day is
to inform our legislators about dystonia and how it has affected our lives.
To register for Advocacy Day or receive more information please e-mail
[mailto:jmolski@dystonia-foundation.org?subject=Advocacy%20Day]
jmolski@dystonia-foundation.org or phone 888-346-3673.
* 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).
From all of us at DMRF, Happy New Year!
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
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
