DMRF eNews - January 2009

DMRF eNews
January 2009

From all of us at the
Dystonia Medical Research Foundation,
Happy New Year!


CELEBRATE NEW YEAR’S WITH DMRF!
Help DMRF ring in the New Year and bring in a Cure for Dystonia. In 2009
we are challenging each of our members to participate in our Dollar a Day
for Dystonia Campaign and personally raise or give $365.

Start year 2009 off right and make a commitment to your own health and well
being by actively making a difference. If you think about it, $1 a day is a
sacrifice that many of us can achieve. By forgoing that latte,walking to
work instead of driving your car, purchasing no name products every once in
a while, this goal is achievable. Throughout the year we will share
creative ideas from our members on how they are raising this money. Set
aside a “Cure Box” and collect your loose change in it. While we
know that this amount is not feasible for everyone, any amount is acceptable
from$3.65 to $3,650! Look for more information on the Dollar a Day Campaign
in February, 2009.

Make your commitment to DMRF your New Year’s Resolution! Up to the
challenge? Let us know at
[mailto:dystonia@dystonia-foundation.org?subject=Up%20to%20the%20challenge?]
dystonia@dystonia-foundation.org.

Looking for an easy way to start making a difference with the Dollar A Day
for Dystonia campaign?

Text DMRF to 90999 today
to make a $5 donation.

A one-time charge of $5 will be added to your mobile phone bill.
Standard messaging rates and additional fees may apply. All charges are
billed by and payable to your mobile service provider. Proceeds benefit the
Dystonia Medical Research Foundation. Service is available on most
carriers. You can unsubscribe at any time by texting 'STOP' to 90999.

Stay Tuned: DBS Reunion in April


Deep Brain Stimulation for Dystonia Symposium
April 17-18, 2009
Nashville, Tennessee

Co-sponsored by the
Dystonia Medical Research Foundation & DBSforDystonia Bulletin Board

Meeting Information

The Deep Brain Stimulation for Dystonia Symposium will take place at the
Embassy Suites Nashville at Vanderbilt in Nashville, Tennessee,Friday April
17 and Saturday April 18, 2009.

Registration Fees

Before March 21 - $50 per person

After March 21 - $75 per person

Stay tuned for more information to come your way soon!


Join us online. The DMRF is excited about our presence on the online
social network scene. Stop by and check us out!

[http://www.youtube.com/user/cemiwire]
-

[http://twitter.com/dmrf]

[http://myspace.com/thedmrf]

[http://thedmrf.ning.com/]

Bringing Science to Life - the Discovery of DYT1

In the next installment of our Bringing Science to Life: Dystonia Research
and Treatments series, Jonathan Mink, MD, PhD speaks candidly about
dystonia treatments, research, and the role of the DMRF.

[http://www.dystonia-foundation.org/pages/exciting_ideas___substantial_hope/516.php]

Haven't seen the first clip in our Bringing Science to Life Series?
Here's another chance to sit in on a conversation between investigators
Xandra Breakefield, PhD and Laurie Ozelius, PhD as they reminisce about
their efforts to identify the DYT1 gene. This gene is associated with early
onset generalized dystonia and has become a cornerstone in dystonia research.

[http://www.dystonia-foundation.org/pages/finding_the_dyt1_gene/511.php]

We welcome your feedback about this series. If you have any questions,
comments or suggestions, please email them to
[mailto:enewsletter@dystonia-foundation.org?subject=Bringing%20Science%20to%20Life]
enewsletter@dystonia-foundation.org.

DMRF Note Cards on Sale

Use these handy little note cards as thank-yous for your holiday gifts or
to wish loved ones a Happy New Year! These attractive blank cards feature
the artwork of DMRF member Neil Marcus and provide information about the
DMRF. A package of 5 cards and envelopes is now on sale for $10.00. To
order please contact the national office by phone at888-346-3673 or e-mail
at [mailto:dystonia@dystonia-foundation.org]
dystonia@dystonia-foundation.org


A Precious Gift

YOU can make a difference in helping to advance crucial dystonia research
by signing up today to become a brain donor. DMRF partners with the NICHD
Brain & Tissue Bank for Developmental Disorders at the University of
Maryland and researchers need both dystonia-affected persons as well as
those who do not have dystonia to participate. There is no charge involved.

For more information, please contact Martha Murphy, Brain Bank Liaison at
[mailto:brainbank@dystonia-foundation.org?subject=I%27d%20like%20more%20information]
brainbank@dystonia-foundation.org or call1-800-377-3978 and please be
certain to provide your full name,postal mailing address, phone number(s)
where you can be reached, and an e-mail address if you have one so that we
can get in touch with you and mail you information.

Mark Your Calendars

JOIN US IN JANUARY
Knowledge is power. That’s why we invite you to empower yourself and
learn about dystonia and your treatment options. Our informative and
interactive sessions will provide you with a current overview of dystonia
and treatment options and help you gain a better understanding of research
underway. Ample time will be available for networking with other affected
individuals.

Seattle, Washington Dystonia Community Education Forum

Saturday, January 10, 2009

To register: [http://www.rsvpbook.com/event.php?489445]
http://www.rsvpbook.com/event.php?489445

Dallas/Ft. Worth, Texas Dystonia Community Education Meeting
Saturday, January 24, 2009

To register: [http://www.rsvpbook.com/event.php?428928]
http://www.rsvpbook.com/event.php?428928

Hudson Valley, NewYork Dystonia Community Education Meeting

Saturday, January 24, 2009

To register: Contact Cindy Miller at845-331-5165, extension 1143 or
at [mailto:nygal1929@gmail.com?subject=DMRF%20Forum] nygal1929@gmail.com

Jacksonville, Florida Dystonia Community Education Meeting

Saturday, January 31, 2009

To register: Contact DMRF at 888-346-3673or
at [mailto:dystonia@dystonia-foundation.org?subject=DMRF%20Forum]
dystonia@dystonia-foundation.org

Dystonia Advocacy Day - May 5 & 6, 2009

The Dystonia Advocacy Coalition* invites you to participate in Dystonia
Advocacy Day in Washington, D.C.on May 5-6, 2009. The goal of this day is
to inform our legislators about dystonia and how it has affected our lives.

To register for Advocacy Day or receive more information please e-mail
[mailto:jmolski@dystonia-foundation.org?subject=Advocacy%20Day]
jmolski@dystonia-foundation.org or phone 888-346-3673.

* The DAC is comprised of the following Dystonia advocacy groups: Benign
Essential Blepharospasm Research Foundation (BEBRF), DySTonia, Inc.,
Dystonia Medical Research Foundation(DMRF), National Spasmodic Dysphonia
Association (NSDA), and National Spasmodic Torticollis Association (NSTA).

From all of us at DMRF, Happy New Year!

Tell us how we are doing. We would love to hear your thoughts about the
newsletter. Email us today at
[mailto:enewsletter@dystonia-foundation.org?subject=Feedback%20about%20eNews]
enewsletter@dystonia-foundation.org
Contact Information

One East Wacker Drive, Suite 2810
Chicago, Illinois 60601
800.377.3978
[mailto:enewsletter@dystonia-foundation.org?subject=Questions,%20comments%20or%20concerns]
enewsletter@dystonia-foundation.org
[http://www.dystonia-foundation.org] www.dystonia-foundation.org
© 2008 DMRF