DMRF eNews - March 2010

DMRF eNews

March 2010 - to ensure delivery, please add
[mailto:enewsletter@dystonia-foundation.org]
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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

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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!

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