DMRF eNews
March 2010 - to ensure delivery, please add
[mailto:enewsletter@dystonia-foundation.org]
enewsletter@dystonia-foundation.org to your address book.
These days, deadlock in Congress seems to be dominating the political
headlines. However, there is one issue area where Members of Congress have
been able to reach across the aisle, find common ground, and work together
to create meaningful progress—bolstering dystonia research.
Dystonia Advocates Secure DOD Research Opportunities
DMRF Advocates from left to right: Janice Nachbar, Joanna Manusov, and Len
Nachbar.
In December of 2009, just before adjourning for the year, Congress passed
the fiscal year (FY) 2010 Defense Appropriations Bill. This annual
legislation funds the Department of Defense (DOD), its Congressionally
Directed Medical Research Program (CDMRP), and lists the conditions
“eligible for study” through the CDMRP. Thanks to the tireless outreach
to Members of Congress by dystonia advocates, for FY 2010 this exclusive
list includes dystonia as one of the conditions eligible for study.
Dystonia’s addition to the eligible conditions list means that dystonia
researchers will now be able to submit research proposals and compete for
funding through appropriate CDMRP grants. For more information about the
submission process, please click
[http://www.dystonia-foundation.org/pages/2010_solicitation_for_research_support_from_dod/364.php]
here.
Congress Increases Funding for Medical Research
The National Institutes of Health (NIH) is the nation’s foremost leader
in federally supported medical research, and hosts a robust dystonia
research portfolio. Congress will not direct funding to disease-specific
research at NIH, so each year dystonia advocates call on their legislators
to provide NIH with substantial funding increases to ensure that all
research portfolios benefit from additional resources. For FY 2010, NIH
received a 2.3% funding increase, or roughly $700 million in additional
budget authority. For FY 2011, the Administration and Congress have both
indicated that they are interested in providing NIH with further funding
increases. Dystonia advocates will continue to work with their legislators
in support of the dystonia research portfolio by ensuring that NIH receives
the largest reasonable FY 2011 allocation possible.
2010 Dystonia Advocacy Day
DMRF advocate Joel Farber visits with his Congresswoman, Jan Schakowsky
(D-IL), during the 2009 Dystonia Advocacy Day networking dinner.
The 2010 Dystonia Advocacy Day is scheduled for Tuesday, May 4th and
Wednesday, May 5th at the Saint Gregory Hotel in Washington, DC. This
two-day event brings dystonia affected individuals from across the country
together on Capitol Hill to educate legislators about dystonia and enlist
congressional support behind advancing research and improving patient care.
The May 4th session of the program features a review of our legislative
agenda, comprehensive training for advocates, and a networking dinner. On
May 5th, participants will visit the offices of their Members of Congress
and meet their elected officials or the staff members who handle health
policy issues. If you would like to register for this event or if you would
like additional information, please visit the page found
[http://www.dystonia-foundation.org/pages/advocacy_day_2009/476.php%20]
here.
Dystonia Advocacy Coalition in now the Dystonia Advocacy Network
DMRF, BEBRF, DySTonia, Inc., NSDA, and NSTA have for the past 4 years
worked together to advocate on issues of common concern to the dystonia
community as the Dystonia Advocacy Coalition (DAC). In February of 2010,
the DAC member organizations decided to change the name of this advocacy
group to the Dystonia Advocacy Network (DAN). The name change is intended
to avoid confusion with the dystonia community’s emerging collaborative
clinical research initiative known as the Dystonia Coalition. This change
is in name only; the DAN’s member organizations, legislative priorities,
and activities remain unchanged.
Interested in Advocacy?
The DMRF relies on its grassroots advocates to educate Members of Congress
about dystonia, raise critical awareness, and secure support for crucial
legislative efforts which benefit dystonia patients. If you are interested
in becoming a dystonia advocate, please contact the DMRF’s Grassroots
Coordinator, Dane Christiansen, at
[mailto:dchristiansen@dystonia-foundation.org?subject=I%20want%20to%20become%20a%20dystonia%20advocate%21]
dchristiansen@dystonia-foundation.org. Additional information on DMRF
advocacy and our legislative priorities can be found
[http://www.dystonia-foundation.org/pages/advocacy/12.php] here.
Other Upcoming Events
3/09/10 CPK Dine In (IL)
3/14/10 Rock N Roll Dallas 1/2 Marathon (TX)
4/09/10 Women Who Weld (NE)
4/23/10
[http://www.dystonia-foundation.org/pages/view_event/225.php?id=97]
Margaritaville (MA)
4/24/10 Flea Market (NJ)
4/24/10 Rock N Roll Nashville Marathon & 1/2 (TN)
5/14/10-
5/15/10
[http://www.dystonia-foundation.org/pages/view_event/225.php?id=168]
DBS[http://www.dystonia-foundation.org/pages/view_event/225.php?id=168]
Forum & Dystonia Symposium-San Francisco(CA)
For information about these or other events, please
[mailto:enewsletter@dystonia-foundation.org?subject=I%27d%20like%20more%20information%20on%20events]
enewsletter@dystonia-foundation.org.
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
[mailto:lsalvatierra@dystonia-foundation.org?subject=I%20want%20to%20go%20the%20Dystance4Dystonia]
Go the Dystance4Dystonia and run for those who can't!
[mailto:lsalvatierra@dystonia-foundation.org?subject=I%27d%20like%20to%20host%20a%20Dogs4Dystonia%20Dog%20Walk]
Host a Dogs4Dystonia Dog Walk in your community today!
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
© 2010 DMRF
Friday, March 5, 2010
Thursday, February 18, 2010
DMRF eNews - February 2010
DMRF eNews
February 2010 - to ensure delivery, please add
[mailto:enewsletter@dystonia-foundation.org]
enewsletter@dystonia-foundation.org to your address book.
The Dystonia Medical Research Foundation (DMRF) is pleased to announce the
formal launch of two new programs, Dystance4Dystonia and Dogs4Dystonia.
Both programs came as a result of some of our most dedicated members as
they looked at ways to do more to support the dystonia community and the
work of the Foundation.
Dystance4Dystonia
Dystance4Dystonia is one of the exciting new programs of the Dystonia
Medical Research Foundation. Those who take part in the Dystance4Dystonia
program will participate in marathons, 10K, 8K and 5K runs and walks in
several communities across the country in 2010, helping to raise much
needed funds. Support garnered for Dystance4 Dystonia program will benefit
the work of the Dystonia Medical Research Foundation (DMRF).
Dystance4Dystonia came from long-time member Cindy DuVal and the Puget
Sound Dystonia Support Group. Entering into it's 10th year, the walk has
made a tremendous impact on the dystonia community in the Washington area.
Our many thanks to Cindy and members of the support group for all of their
work over the years!
Calling all runners, walkers and volunteers to join Dystance4Dystonia
We are looking for runners (all levels), walkers and people that want to
make a difference in our community to join us as we partake in a number of
fun races across the country, helping to raise much needed funds in the
process. Think you can’t make a full marathon? Don’t worry, we have
full, ½ marathons, 8K, and 5K and we need your help to reach our goal.
All participants will receive an official 2010 event t-shirt,
refreshments and a huge THANK YOU from the Dystonia Medical Research
Foundation and its network. See our list of races below.
If you or someone you know is interested in going the Dystance4Dystonia,
please contact Lissa at
[mailto:lsalvatierra@dystonia-foundation.org?subject=More%20information%20on%20Dystance4Dystonia]
lsalvatierra@dystonia-foundation.org. Please make sure you contact Lissa
if you would like to register to participate in support of the DMRF for any of the races.
2010 Races
Are you ready to run now? We are looking for people to participate in
our March and April races and are waiting to hear from you! Run for those
who can't!
03/14/10 Dallas 1/2 Marathon
03/21/10 Bank of America Shamrock Shuffle 8k
04/24/10 Nashville Marathon and 1/2
05/01/10 Wisconsin Marathon
05/02/10 Flying Pig Marathon
05/02/10 Eugene Marathon
05/08/10 5/3 River Bank Run
06/06/10 San Diego Marathon and 1/2
06/26/10 Seattle Marathon and 1/2
08/01/10 Chicago 1/2 Marathon
09/05/10 Virginia 1/2 Marathon
09/19/10 Philadelphia 1/2 Marathon
10/03/10 San Jose 1/2 Marathon
10/10/10 Bank of America Chicago Marathon
10/24/10 Los Angeles 1/2 Marathon
11/14/10 San Antonio Marathon and 1/2
12/05/10 Las Vegas Marathon
Questions: Contact Lissa, the Manager of Special Events, at
[mailto:lsalvatierra@dystonia-foundation.org?subject=More%20information%20on%20Dystance4Dystonia]
lsalvatierra@dystonia-foundation.org or 312.447.5095 to find out how you
can go the Dystance4Dystonia!
Follow Dystance4Dystonia on Facebook
[http://www.facebook.com/pages/Dystance4Dystonia/296350820945]
http://www.facebook.com/pages/Dystance4Dystonia/296350820945
and on Twitter
[http://twitter.com/dyst4dystonia] http://twitter.com/dyst4dystonia
Dogs4Dystonia
"Dogs are not our whole life, but they make our lives whole."
~ Roger Caras
Dogs are important to many. They are faithful companions and friends,
always there without question. For many with dystonia, dogs offer the
guidance and support needed to help their owners get through the day.
Dogs4Dystonia came from Janice and Len Nachbar and Joanna Manusov,
long-time volunteers in the Central NJ area. The DMRF is grateful to
Janice, Len and Joanna for creating this wonderful program.
Dogs4Dystonia Dog Walks are a great way to bring together family, friends
and the community together for a fun time in support of a good cause.
Whether you are a dog owner, a dog lover, or someone who just wants to do
something for dystonia, the Dogs4Dystonia Dog Walks may just be up your
alley.
Do you have the cutest dog?
Is your dog the best tail wagger out there?
How does your dog rate?
Stay tuned for more information on how to enter your dog into the
Dogs4Dystonia Virtual Dog Walk. Get your cameras ready and start capturing
those attention grabbing shots of your four legged friend!
Would you be interested in bringing a Dogs4Dystonia Dog Walk to your
community? Email Lissa at
[mailto:lsalvatierra@dystonia-foundation.org?subject=Dogs%20for%20Dystonia%20Dog%20Walk]
lsalvatierra@dystonia-foundation.org today!
Follow Dogs4Dystonia on Facebook
[http://www.facebook.com/pages/dogs4dystonia/310473013264]
http://www.facebook.com/pages/dogs4dystonia/310473013264
and on Twitter
[http://twitter.com/dogs4dystonia] http://twitter.com/dogs4dystonia
Other Upcoming Events
Should you prefer to organize your own event in support of the DMRF, we
are here to help. Call us today at 312.447.5095 to get started!
2/12/10 [http://www.rsvpbook.com/event.php?449115] MN Sleigh Ride, Dinner
and Concert
4/23/10 Margaritaville (MA)
4/24/10 Flea Market (NJ)
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
February 2010 - to ensure delivery, please add
[mailto:enewsletter@dystonia-foundation.org]
enewsletter@dystonia-foundation.org to your address book.
The Dystonia Medical Research Foundation (DMRF) is pleased to announce the
formal launch of two new programs, Dystance4Dystonia and Dogs4Dystonia.
Both programs came as a result of some of our most dedicated members as
they looked at ways to do more to support the dystonia community and the
work of the Foundation.
Dystance4Dystonia
Dystance4Dystonia is one of the exciting new programs of the Dystonia
Medical Research Foundation. Those who take part in the Dystance4Dystonia
program will participate in marathons, 10K, 8K and 5K runs and walks in
several communities across the country in 2010, helping to raise much
needed funds. Support garnered for Dystance4 Dystonia program will benefit
the work of the Dystonia Medical Research Foundation (DMRF).
Dystance4Dystonia came from long-time member Cindy DuVal and the Puget
Sound Dystonia Support Group. Entering into it's 10th year, the walk has
made a tremendous impact on the dystonia community in the Washington area.
Our many thanks to Cindy and members of the support group for all of their
work over the years!
Calling all runners, walkers and volunteers to join Dystance4Dystonia
We are looking for runners (all levels), walkers and people that want to
make a difference in our community to join us as we partake in a number of
fun races across the country, helping to raise much needed funds in the
process. Think you can’t make a full marathon? Don’t worry, we have
full, ½ marathons, 8K, and 5K and we need your help to reach our goal.
All participants will receive an official 2010 event t-shirt,
refreshments and a huge THANK YOU from the Dystonia Medical Research
Foundation and its network. See our list of races below.
If you or someone you know is interested in going the Dystance4Dystonia,
please contact Lissa at
[mailto:lsalvatierra@dystonia-foundation.org?subject=More%20information%20on%20Dystance4Dystonia]
lsalvatierra@dystonia-foundation.org. Please make sure you contact Lissa
if you would like to register to participate in support of the DMRF for any of the races.
2010 Races
Are you ready to run now? We are looking for people to participate in
our March and April races and are waiting to hear from you! Run for those
who can't!
03/14/10 Dallas 1/2 Marathon
03/21/10 Bank of America Shamrock Shuffle 8k
04/24/10 Nashville Marathon and 1/2
05/01/10 Wisconsin Marathon
05/02/10 Flying Pig Marathon
05/02/10 Eugene Marathon
05/08/10 5/3 River Bank Run
06/06/10 San Diego Marathon and 1/2
06/26/10 Seattle Marathon and 1/2
08/01/10 Chicago 1/2 Marathon
09/05/10 Virginia 1/2 Marathon
09/19/10 Philadelphia 1/2 Marathon
10/03/10 San Jose 1/2 Marathon
10/10/10 Bank of America Chicago Marathon
10/24/10 Los Angeles 1/2 Marathon
11/14/10 San Antonio Marathon and 1/2
12/05/10 Las Vegas Marathon
Questions: Contact Lissa, the Manager of Special Events, at
[mailto:lsalvatierra@dystonia-foundation.org?subject=More%20information%20on%20Dystance4Dystonia]
lsalvatierra@dystonia-foundation.org or 312.447.5095 to find out how you
can go the Dystance4Dystonia!
Follow Dystance4Dystonia on Facebook
[http://www.facebook.com/pages/Dystance4Dystonia/296350820945]
http://www.facebook.com/pages/Dystance4Dystonia/296350820945
and on Twitter
[http://twitter.com/dyst4dystonia] http://twitter.com/dyst4dystonia
Dogs4Dystonia
"Dogs are not our whole life, but they make our lives whole."
~ Roger Caras
Dogs are important to many. They are faithful companions and friends,
always there without question. For many with dystonia, dogs offer the
guidance and support needed to help their owners get through the day.
Dogs4Dystonia came from Janice and Len Nachbar and Joanna Manusov,
long-time volunteers in the Central NJ area. The DMRF is grateful to
Janice, Len and Joanna for creating this wonderful program.
Dogs4Dystonia Dog Walks are a great way to bring together family, friends
and the community together for a fun time in support of a good cause.
Whether you are a dog owner, a dog lover, or someone who just wants to do
something for dystonia, the Dogs4Dystonia Dog Walks may just be up your
alley.
Do you have the cutest dog?
Is your dog the best tail wagger out there?
How does your dog rate?
Stay tuned for more information on how to enter your dog into the
Dogs4Dystonia Virtual Dog Walk. Get your cameras ready and start capturing
those attention grabbing shots of your four legged friend!
Would you be interested in bringing a Dogs4Dystonia Dog Walk to your
community? Email Lissa at
[mailto:lsalvatierra@dystonia-foundation.org?subject=Dogs%20for%20Dystonia%20Dog%20Walk]
lsalvatierra@dystonia-foundation.org today!
Follow Dogs4Dystonia on Facebook
[http://www.facebook.com/pages/dogs4dystonia/310473013264]
http://www.facebook.com/pages/dogs4dystonia/310473013264
and on Twitter
[http://twitter.com/dogs4dystonia] http://twitter.com/dogs4dystonia
Other Upcoming Events
Should you prefer to organize your own event in support of the DMRF, we
are here to help. Call us today at 312.447.5095 to get started!
2/12/10 [http://www.rsvpbook.com/event.php?449115] MN Sleigh Ride, Dinner
and Concert
4/23/10 Margaritaville (MA)
4/24/10 Flea Market (NJ)
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, February 9, 2010
DMRF eNews - January 2010
DMRF eNews
January 2010 - to ensure delivery, please add
[mailto:enewsletter@dystonia-foundation.org]
enewsletter@dystonia-foundation.org to your address book.
Happy New Year
From everyone at the DMRF, a Happy New Year. We are looking forward to
continuing the momentum that the events of 2009 generated into 2010. There
is much to be grateful for as we look back at the
[http://www.dystonia-foundation.org/2009Review] milestones from last year.
· The wonderful
[http://www.dystonia-foundation.org/pages/research_in_2009/148.php]
research projects supported by the DMRF in 2009. We are beginning to
receive progress reports from the work funded by the Foundation last year
and it is exciting to see results. We are always pleased with our
fellowships – funding young investigators is so important.
· Working in partnership with the Foundation for Dystonia
Research, the DMRF launched a $1.8 million dollar research contract to
identify and validate novel molecular targets for dystonia drug discovery
and development. This project is possible because of the many years of
research the DMRF has supported – including the DMRF funded discovery of
the DYT1 gene in 1997. The first phase of this enormous scientific project
was completed in 2009.
· Additionally, the DMRF is contracting for the development of a
new animal model for dystonia. This is also important for drug
discovery/development.
· DMRF continues to hold discussions with pharma to engage them
in dystonia. In 2009 a significant meetings were held and we are
optimistic about the interest expressed in dystonia – developing into
additional, new treatments for dystonia.
· DMRF was pleased to join with Tyler’s Hope in launching a
patient registry for DYT1 dystonia – another important element in getting
new treatments on the market.
· Our scientific meetings continue to be important. Last year,
the DMRF hosted a meeting for young investigators, a meeting on myclonus
dystonia and a number of other meetings to help support the development of
the NIH/ORD Dystonia Coalition program.
· The [http://www.youtube.com/watch?v=Mc4CZAD5rw8] Children &
Family Symposium was a major success – with many new families learning
that they are not alone. This combined with our ongoing educational
efforts and the fabulous support/education efforts of our support groups
has provided accurate information to thousands of people.
· The
[http://www.dystonia-foundation.org/pages/dystonia_coalition_obtains_ord_grant/362.php]
Dystonia Coalition – the clinical research program approved by NIH is a
major step forward for the community. The DMRF is proud to serve as an
administrative center for this important program – providing
administrative support for meetings, payments to the clinical sites, pilot
projects and this past year, to have co-sponsored the Career Development
Award.
· Last – but certainly not least – we are grateful to join
with our advocacy partners the Benign Essential Blepharospasm Research
Foundation, DySTonia, Inc., the National Spasmodic Dysphonia Association
and the National Spasmodic Torticollis Assocition in celebrating
[http://www.dystonia-foundation.org/pages/dac_paves_way_for_new_research_funding/367.php]
the addition of dystonia to the list of eligible diseases for funding
through the Congressionally Directed Medical Research Program. This was a
wonderful way to end the year.
2010 looks to be a year of continued progress. The research grant
applications recently submitted look good – these will be reviewed in
February when our Medical & Scientific Advisory Council will be meeting.
We will be launching new scientific exploration through our contract
program and look forward to sponsoring and participating in key scientific
meetings throughout the year.
We also look forward to continuing our community education programs,
webinars, a western regional meeting and another successful
[http://www.rsvpbook.com/event.php?470398] Advocacy Day this spring.
Achieving our goal of a cure for all forms of dystonia can’t be done
alone. We appreciate the partnerships we have globally and thank all of
you for your support of the DMRF. We look forward to sharing with you the
progress of the coming year and to hearing from you about how we can help
you until that wonderful day when our work is finished.
Upcoming Events
1/30/10 [http://www.rsvpbook.com/event.php?406573] Dystonia Patient
Educational Symposium
2/12/10 [http://www.rsvpbook.com/event.php?449115] MN Sleigh Ride,
Dinner and Concert
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
January 2010 - to ensure delivery, please add
[mailto:enewsletter@dystonia-foundation.org]
enewsletter@dystonia-foundation.org to your address book.
Happy New Year
From everyone at the DMRF, a Happy New Year. We are looking forward to
continuing the momentum that the events of 2009 generated into 2010. There
is much to be grateful for as we look back at the
[http://www.dystonia-foundation.org/2009Review] milestones from last year.
· The wonderful
[http://www.dystonia-foundation.org/pages/research_in_2009/148.php]
research projects supported by the DMRF in 2009. We are beginning to
receive progress reports from the work funded by the Foundation last year
and it is exciting to see results. We are always pleased with our
fellowships – funding young investigators is so important.
· Working in partnership with the Foundation for Dystonia
Research, the DMRF launched a $1.8 million dollar research contract to
identify and validate novel molecular targets for dystonia drug discovery
and development. This project is possible because of the many years of
research the DMRF has supported – including the DMRF funded discovery of
the DYT1 gene in 1997. The first phase of this enormous scientific project
was completed in 2009.
· Additionally, the DMRF is contracting for the development of a
new animal model for dystonia. This is also important for drug
discovery/development.
· DMRF continues to hold discussions with pharma to engage them
in dystonia. In 2009 a significant meetings were held and we are
optimistic about the interest expressed in dystonia – developing into
additional, new treatments for dystonia.
· DMRF was pleased to join with Tyler’s Hope in launching a
patient registry for DYT1 dystonia – another important element in getting
new treatments on the market.
· Our scientific meetings continue to be important. Last year,
the DMRF hosted a meeting for young investigators, a meeting on myclonus
dystonia and a number of other meetings to help support the development of
the NIH/ORD Dystonia Coalition program.
· The [http://www.youtube.com/watch?v=Mc4CZAD5rw8] Children &
Family Symposium was a major success – with many new families learning
that they are not alone. This combined with our ongoing educational
efforts and the fabulous support/education efforts of our support groups
has provided accurate information to thousands of people.
· The
[http://www.dystonia-foundation.org/pages/dystonia_coalition_obtains_ord_grant/362.php]
Dystonia Coalition – the clinical research program approved by NIH is a
major step forward for the community. The DMRF is proud to serve as an
administrative center for this important program – providing
administrative support for meetings, payments to the clinical sites, pilot
projects and this past year, to have co-sponsored the Career Development
Award.
· Last – but certainly not least – we are grateful to join
with our advocacy partners the Benign Essential Blepharospasm Research
Foundation, DySTonia, Inc., the National Spasmodic Dysphonia Association
and the National Spasmodic Torticollis Assocition in celebrating
[http://www.dystonia-foundation.org/pages/dac_paves_way_for_new_research_funding/367.php]
the addition of dystonia to the list of eligible diseases for funding
through the Congressionally Directed Medical Research Program. This was a
wonderful way to end the year.
2010 looks to be a year of continued progress. The research grant
applications recently submitted look good – these will be reviewed in
February when our Medical & Scientific Advisory Council will be meeting.
We will be launching new scientific exploration through our contract
program and look forward to sponsoring and participating in key scientific
meetings throughout the year.
We also look forward to continuing our community education programs,
webinars, a western regional meeting and another successful
[http://www.rsvpbook.com/event.php?470398] Advocacy Day this spring.
Achieving our goal of a cure for all forms of dystonia can’t be done
alone. We appreciate the partnerships we have globally and thank all of
you for your support of the DMRF. We look forward to sharing with you the
progress of the coming year and to hearing from you about how we can help
you until that wonderful day when our work is finished.
Upcoming Events
1/30/10 [http://www.rsvpbook.com/event.php?406573] Dystonia Patient
Educational Symposium
2/12/10 [http://www.rsvpbook.com/event.php?449115] MN Sleigh Ride,
Dinner and Concert
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
DMRF eNews - November 2009
DMRF eNews
November 2009 - to ensure delivery, please add
[mailto:enewsletter@dystonia-foundation.org]
enewsletter@dystonia-foundation.org to your address book.
NIH Announces Expansion of Rare Diseases Clinical Research Network
The DMRF is pleased to be joining other members of the recently
announced, National Institutes of Health (NIH) funded Dystonia Coalition
this week for its first annual meeting. The meeting will review the three
clinical projects supported by this cooperative agreement and provide an
opportunity for the dystonia foundations to present on what they are
looking for from this important effort. DMRF is honored to work with
Bachmann-Strauss Dystonia & Parkinson Foundation (BSDPF), the Benign
Essential Blepharospam Foundation (BEBRF), DySTonia, Inc. (DI), the
National Spasmodic Dysphonia Association (NSDA), the National Spasmodic
Torticollis Association (NSTA), Tyler ’s Hope and WE MOVE along with
Drs. Buz Jinnah, Joel Perlmutter, Cindy Comella and Christy Ludlow,
representatives from NINDS and many, many other leading clinical
researchers in fulfilling the promise of this program. Stay tuned for
additional information about this meeting. Visit the
[http://dmrfinsights.blogspot.com/] DMRF Insights Blog next week to learn
more.
DMRF Funded Research in 2009
Check out the DMRF funded research projects for 2009. We are proud of
the work being carried out by these investigators and look forward to
projects presented for next year.
For more information about this research, please
[http://www.dystonia-foundation.org/pages/research_in_2009/148.php] click
here.
Awareness Update
Billy McLaughlin, DMRF Ambassador, continues to raise awareness about
dystonia. He is slated to perform at the Space in Evanston on Saturday,
November 7th. [http://www.evanstonspace.com/] Click here for more
information.
Community Day 2009 - November 14th
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!
Advocacy
The DMRF would like to invite you to attend Dystonia Advocacy Day 2010 on
Tuesday, May 4^th and Wednesday, May 5^th in Washington , DC . Dystonia
Advocacy Day is a popular annual event that brings patients, family
members, and friends from across the country together on Capitol Hill to
advocate on behalf of the dystonia community. Participants have the
opportunity to attend a networking dinner, receive state-of-the-science
updates on dystonia research, engage in comprehensive advocacy training
sessions, and meet with their Members of Congress.
If you would like additional information on Dystonia Advocacy Day 2010 or
if you would like to preliminarily register for the event and receive all
relevant updates and information, please visit the following section of the
DMRF website:
[http://www.dystonia-foundation.org/pages/advocacy_day_2009/476.php]
http://www.dystonia-foundation.org/pages/advocacy_day_2009/476.php.
Upcoming Events
11/11/09 Omaha Awareness Event
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
Happy Thanksgiving
Order the child in your life a 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)
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
November 2009 - to ensure delivery, please add
[mailto:enewsletter@dystonia-foundation.org]
enewsletter@dystonia-foundation.org to your address book.
NIH Announces Expansion of Rare Diseases Clinical Research Network
The DMRF is pleased to be joining other members of the recently
announced, National Institutes of Health (NIH) funded Dystonia Coalition
this week for its first annual meeting. The meeting will review the three
clinical projects supported by this cooperative agreement and provide an
opportunity for the dystonia foundations to present on what they are
looking for from this important effort. DMRF is honored to work with
Bachmann-Strauss Dystonia & Parkinson Foundation (BSDPF), the Benign
Essential Blepharospam Foundation (BEBRF), DySTonia, Inc. (DI), the
National Spasmodic Dysphonia Association (NSDA), the National Spasmodic
Torticollis Association (NSTA), Tyler ’s Hope and WE MOVE along with
Drs. Buz Jinnah, Joel Perlmutter, Cindy Comella and Christy Ludlow,
representatives from NINDS and many, many other leading clinical
researchers in fulfilling the promise of this program. Stay tuned for
additional information about this meeting. Visit the
[http://dmrfinsights.blogspot.com/] DMRF Insights Blog next week to learn
more.
DMRF Funded Research in 2009
Check out the DMRF funded research projects for 2009. We are proud of
the work being carried out by these investigators and look forward to
projects presented for next year.
For more information about this research, please
[http://www.dystonia-foundation.org/pages/research_in_2009/148.php] click
here.
Awareness Update
Billy McLaughlin, DMRF Ambassador, continues to raise awareness about
dystonia. He is slated to perform at the Space in Evanston on Saturday,
November 7th. [http://www.evanstonspace.com/] Click here for more
information.
Community Day 2009 - November 14th
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!
Advocacy
The DMRF would like to invite you to attend Dystonia Advocacy Day 2010 on
Tuesday, May 4^th and Wednesday, May 5^th in Washington , DC . Dystonia
Advocacy Day is a popular annual event that brings patients, family
members, and friends from across the country together on Capitol Hill to
advocate on behalf of the dystonia community. Participants have the
opportunity to attend a networking dinner, receive state-of-the-science
updates on dystonia research, engage in comprehensive advocacy training
sessions, and meet with their Members of Congress.
If you would like additional information on Dystonia Advocacy Day 2010 or
if you would like to preliminarily register for the event and receive all
relevant updates and information, please visit the following section of the
DMRF website:
[http://www.dystonia-foundation.org/pages/advocacy_day_2009/476.php]
http://www.dystonia-foundation.org/pages/advocacy_day_2009/476.php.
Upcoming Events
11/11/09 Omaha Awareness Event
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
Happy Thanksgiving
Order the child in your life a 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)
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
DMRF eNews - October 2009
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
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
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
Subscribe to:
Posts (Atom)
Posts
