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
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© 2009 DMRF