DMRF eNews - December 2010

DMRF eNews
December 2010 - to ensure delivery, please add
[12]enewsletter@dystonia-foundation.org to your address book.

The DMRF is proud of the work carried out in 2010. The impact of our programs
is vast, touching the lives of many, making a difference far beyond what the
eye can see. As we look back on the year, it is evident that we are making
progress in the dystonia community.

Science Highlights

The DMRF funded a number of cutting-edge [13]research projects in 2010. In
addition to our grant and fellowship program which supports young
investigators, we contracted with researchers to fund targeted studies on the
development of animal models and testing of compounds that interact with
specific receptors in the brain. This work will expand our knowledge of
dystonia, leading to the development of new therapies.
Through our partnership with the [14]Dystonia Coalition, we supported the
Coalition’s Career Development Award Program, aimed at funding young clinical
investigators to help them establish careers in dystonia research. We also
continue to provide support to the Coalition as an administrative center and
work closely with the Coalition Primary Investigator, Dr. Buz Jinnah.
DMRF also assisted in the organization of the Dystonia Coalition’s Second
Annual Meeting held in Atlanta, GA. There were more than 100 participants
including healthcare professionals, researchers, pharmaceutical company
representatives, and representatives from dystonia patient organizations. The
meeting was a great success with many of the participants providing positive
feedback about the progress made by the Coalition in its first year.

The [15]DMRF is collaborating with Tyler’s Hope for a Dystonia Cure in funding
the second phase of a ground-breaking research project seeking to identify
proteins whose modification effects the genetic mutation that results in
dystonia. The first phase of the project, funded by DMRF in 2009, resulted in
an assay to test for genes and proteins that interact with torsinA. The second
phase of the project will screen the assay developed during Phase 1. The
outcome of this high risk, high return research could lead to targets for new
dystonia drugs.

As a result of outcomes from the Myoclonus Workshop held in late 2009, the DMRF
is supporting a Myoclonus Research Program over the next three years aimed at
supporting clinical research on [16]Myoclonus dystonia.

Advocacy Program

The Dystonia Medical Research Foundation (DMRF), Benign Essential Blepharospasm
Research Foundation (BEBRF), ST/Dystonia, Inc., National Spasmodic Dysphonia
Association (NSDA), and National Spasmodic Torticollis Association (NSTA)
advocate on legislative and regulatory issues of common concern as the
[17]Dystonia Advocacy Network (DAN).

DAN advocates were kept busy in 2010 as a number of issues emerged. The annual
effort to keep dystonia as one of the exclusive “conditions eligible for
study” through the Department of Defense Peer-Reviewed Medical Research Program
received special attention as DAN Advocate Kathy Rentfrow [pictured above,
meets with Senator Daniel Inouye (D-HI)] was called to testify on this issue
before the Senate Defense Appropriations Subcommittee.

DAN advocates also tackled an unexpected issue as access to the new dystonia
treatment Xeomin® was restricted by bureaucratic processes (After receiving FDA
approval, Xeomin® was not scheduled to receive a permanent unique billing code
for reimbursement until 2012, thus making it unlikely that physicians would
begin using the product for over a year). DAN advocates reached out to key
legislators and asked them to encourage the Center for Medicare and Medicaid
Services (CMS) to issue Xeomin® a temporary billing code as early as possible
so that dystonia patients with limited treatment options do not have to wait
for access to all approved therapies. Pictured above is DAN advocate Emma
Mattes with her Congressman, Bill Young (R-FL).

DAN advocates also worked to encourage passage of a key piece of legislation,
the National Neurological Diseases Surveillance Systems Act (H.R. 1362). This
bill would bolster research efforts by establishing a national network for the
collection and storage of data on neurological diseases. The House of
Representatives has passed this bill and if DAN advocates can convince the
Senate to pass the bill as well before Congress adjourns for the year, the H.R.
1362 will be sent to the President for final approval.

If you would like to join the DAN’s nationwide grassroots network by becoming a
dystonia advocate, please contact the DMRF’s Grassroots Coordinator, Dane
Christiansen, at [18]dchristiansen@dystonia-foundation.org

Awareness & Education

The DMRF was pleased to provide the dystonia community with the following
awareness activities and programs in 2010.

Awareness
The DMRF launched an online campaign to commemorate Dystonia Awareness Week,
June 6-12, 2010. Faces of Dystonia was a series of profiles about members of
the dystonia community. One profile was distributed on each day of Awareness
Week. The individuals represented diverse forms of dystonia, roles with the
DMRF, ages, and geography. Each story both highlighted the individual’s unique
story and reflected a DMRF program or activity.

Support
DMRF Support Groups empower patients, family members, and friends with
information and offer a venue for discussing and allowing their changing needs
to be heard. Support groups provide members the opportunity to be and stay
connected with others who can truly empathize with how dystonia changes lives.

To find a dystonia support group in your area, [19]click here.

Symposia

Deep Brain Stimulation Symposium & Dystonia Forum:The DMRF partnered with
University of California, San Francisco (UCSF) Movement Disorders Program and
the DBSforDystonia online bulletin board to host a special ‘double-decker’
event in May that included a track specifically on deep brain stimulation for
dystonia and sessions providing an overview of dystonia. Medical speakers
included experts from UCSF and Stanford University.
Western Regional Dystonia Symposium:The [20]Western Regional Dystonia Symposium
in Pasadena, California held in October featured DMRF Awareness Ambassador and
dystonia-affected guitarist Billy McLaughlin, who performed at the Friday
evening welcome dinner and reception. The stellar line-up of speakers included
professionals from throughout southern California and beyond.

Mid-Atlantic Regional Dystonia Conference: The Greater Washington, DC Dystonia
Support Group hosted an educational meeting in November. Experts presented on
the latest in dystonia research and treatments such as acupuncture and Chinese
medicine, traditional treatments and surgical options like Deep Brain
Stimulation. Breakout sessions were available for specific topics concerning
dystonia patients.
Webinars

Dystonia & Siblings focused on helping the siblings of those children affected
by dystonia. Moderated by Kathy Rentfrow, a mother of two and a foster parent,
has a teen-aged daughter who was diagnosed with dystonia. Kathy has been a
featured speaker at DMRF Children & Family Symposiam, has a masters degree in
education ans has been a long time advocate for dystonia.

[21]Dystonia International Patient Registry (DIPR), founded by Tyler's Hope for
A Dystonia Cure and supported by the Dystonia Medical Research Foundation
(DMRF). In this webinar, moderated by the DIPR's Medical Advisor Dr. Michael
Okun, discussed patient registries and why they are so important.

[22]Dystonia & Managing Holiday Stress, while full of excitement, this can also
be a time of increased stress which can worsen dystonia symptoms. Moderated by
Dr. Bryan Bernard, Neuropsychologist at Rush University Medical Center,
discussed techniques and learning ways of coping with stress.

Stay tuned...

Research Update moderated by Science Office Jan Teller, MA, PhD. Call and log
in to hear the latest news on DMRF science activities. Advance registration
encouraged.

For more information and to register, [23]

[24]click here.

Dystonia Programs
The Foundation launched two new fundraising programs, Dogs4Dystonia and
Dystance4Dystonia. A number of these events were held in communities across
the country to raise awareness and much needed funds to support our quest for a
cure.

Dogs4Dystonia are dog walks for everyone, whether you are a dog owner, a dog
lover, or someone who just wants to do something to support the work of the
DMRF in the dystonia community.
Thank you to Carmelita de la Guardia, Antonella Gosselin, Hunter Webster, Len
and Janice Nachbar, Joanna Manusov, and Maria and Amy Yurchision who hosted
walks this year.

Many took part in the Dystance4Dystonia
program participated in marathons, 10K, 8K, and 5K runs and walks across the
country.

Thank you to Jim and Dianne Loy, Kathleen Whitman,
William Williams, Team Libby, Dena Sherry, Edie DeLorme, Judy Watson, Julie
Zaia, Kara Wilke, Aaron and Jessica Meyer, Meredith Fain, Jen Cannon, Jennifer
Molski, Scott and Katie Biedess, Tiffany Wonser, Stephanie Wilson, Russ Johnson
and Helen Capparell for going the dystance.

Both programs offer family, friends, neighbors and colleagues the opportunity
to show their support for the dystonia community while helping to raise much
needed funds for our programming.

To learn more about how you can bring an event to your community, email Tammy
at [25]treed@dystonia-foundation.org

Upcoming Events
[26]

12/11/10 [27]Central Jersey Dystonia Support & Action Group
12/18/10 [28]Arkansas Dystonia SG Meeting
12/13/10 [29]Minneapolis, MN SG Meeting
01/26/11 [30]Research Update Webinar
02/05/11 [31]Rhode Island Dystonia & Neurological Movement
[32]disorder SG Meeting
[33]
[34]

For information about these or other events, please email us at
[35]enewsletter@dystonia-foundation.org.

References

1. mailto:enewsletter@dystonia-foundation.org?subject=Feedback%20about%20eNews
2. http://dystance4dystonia.org/joomla/index.php?option=com_content&view=article&id=47&Itemid=55
3. http://dystance4dystonia.org/joomla/index.php?option=com_content&view=article&id=46&Itemid=54
4. http://dmrfenews.blogspot.com/
5. http://www.facebook.com/inbox/?ref=mb#/pages/Dystonia-Medical-Research-Foundation/46820882711
6. http://www.myspace.com/thedmrf
7. http://thedmrf.ning.com/
8. http://twitter.com/dmrf
9. http://www.dystonia-foundation.org/pages/combined_federal_campaign/595.php
10. mailto:enewsletter@dystonia-foundation.org?subject=Questions,%20comments%20or%20concerns
11. http://www.dystonia-foundation.org/
12. mailto:enewsletter@dystonia-foundation.org
13. http://www.dystonia-foundation.org/pages/research_in_2010/148.php
14. http://www.dystonia-foundation.org/pages/dystonia_coalition_/603.php
15. http://www.dystonia-foundation.org/pages/articles/221.php?id=13
16. http://www.dystonia-foundation.org/pages/myoclonic_dystonia/65.php
17. http://www.dystonia-advocacy.org/
18. mailto:dchristiansen@dystonia-foundation.org?subject=Advocacy
19. http://www.dystonia-foundation.org/pages/support_groups/107.php
20. http://www.dystonia-foundation.org/pages/articles_from_the_dystonia_dialogue/221.php?id=19
21. http://www.dystonia-foundation.org/pages/dystonia_international_patient_registry_webinar/608.php
22. http://www.dystonia-foundation.org/pages/dystonia___holiday_stress_webinar/607.php
23. https://www2.gotomeeting.com/register/599425898
24. https://www2.gotomeeting.com/register/599425898
25. mailto:treed@dystonia-foundation.org
26. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=27&Itemid=89&year=2010&month=05&day=14&title=deep-brain-stimulation-forum-a-dystonia-symposium&uid=8f24db63e8c7c06db597a82258b43c11
27. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=133&Itemid=89&year=2010&month=12&day=11&title=central-jersey-dystonia-support-a-action-group&uid=07998a770716ba49695f6d5ddfb540a0
28. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=145&Itemid=89&year=2010&month=12&day=18&title=arkansas-dystonia-sg-meeting&uid=059982f7ae3399ace954d0a30945d441
29. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=148&Itemid=89&year=2010&month=12&day=13&title=minneapolis-mn-sg-meeting&uid=a8611e0d0c199a4f4f2b704a58d400d0
30. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=142&Itemid=89&year=2011&month=01&day=26&title=research-update-webinar&uid=78253f152274b15e93d87ff4d731a195
31. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=149&Itemid=89&year=2011&month=02&day=05&title=rhode-island-dystonia-a-neurological-movement-disorder-sg&uid=1f8ee053dfc624cfca198e18bc9802af
32. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=149&Itemid=89&year=2011&month=02&day=05&title=rhode-island-dystonia-a-neurological-movement-disorder-sg&uid=1f8ee053dfc624cfca198e18bc9802af
33. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=86&Itemid=89&year=2010&month=06&day=12&title=central-virginia-dysphonia-dystonia-sg-meeting&uid=678a6bbdfa2256a39aa1d83c4689d9d6
34. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=15&Itemid=89&year=2010&month=09&day=19&title=rnr-philadelphia-12-marathon&uid=4becdfa0f9c0515c6bc6a631db72c912
35. mailto:enewsletter@dystonia-foundation.org?subject=I%27d%20like%20more%20information%20on%20events

IN THIS ISSUE:

Science Highlights
Advocacy Program
Awareness & Education
Dystonia Programs

Upcoming Events

Tell us how we are doing. We would love to hear your thoughts about the
newsletter. Email us today at

[1]enewsletter@dystonia-foundation.org

[2]Go the Dystance4Dystonia and run for those who can't!

[3]Host a Dogs4Dystonia Dog Walk in your community today!

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[10]enewsletter@dystonia-foundation.org
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