DMRF eNews - March 2009

DMRF eNews

March 2009

DMRF is pleased to announce our participation in the 2009 Bank of America
Chicago Marathon Charity Program

The Bank of America Chicago Marathon hosts thousands of runners who choose
to make their Chicago Marathon experience more meaningful by running on
behalf of a charity. These runners begin the training season with goals for
personal bests in their marathon time as well as in fundraising dollars. The
impact from every charity runner is felt around the world.

In 2008, more than 7,300 charity runners collectively raised nearly$10
million for organizations around the globe. The bar is once again set high
for the 2009 Bank of America Chicago Marathon!

If you are interested in participating in the 2009 Bank of America Chicago
Marathon as a charity runner for the DMRF, please send an email to
[mailto:enewsletter@dystonia-foundation.org?subject=I%27d%20like%20more%20information%20about%20the%20marathon]
enewsletter@dystonia-foundation.org today.

Our race continues...

In January, we announced the launch of our Dollar a Day for Dystonia Campaign asking everyone to personally raise or give $365. Each dollar, each day makes a difference. From funding progressive research to sharing updates in the community to forging the paths for lifelong connections, each dollar goes a long way. Join us in our race to make a difference!

[https://mightysite2.securesites.net/www.dystonia-foundation.org/pages/donate_form/189.php] My Dollar a Day Commitment

Why not start today?

Invite your family and friends to join you in the Dollar a Day Commitment!

Ask each of them to text DMRF to 90999 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.

See how others are joining in on the race...

The South Sound Blues Association, in collaboration with Oxford
Entertainment and Della Records, is pleased to announce the release of an
amazing new CD, "Big Blues for Little Bill." The CD is the result of
efforts by some of the Pacific Northwest's most important blues artists to
honor Little Bill Engelhart, a NW blues legend, and to benefit the Dystonia
Medical Research Foundation (DMRF), an organization dear to Bill's heart,
as his son Tony was diagnosed with generalized dystonia many years ago.

In Bill's mind this tribute is about his admiration for his son's bravery
as he deals with dystonia. Tony's response to the projected contribution
to DMRF is that the resulting research may help someone who is in worse
shape than he.

In celebration of the release of the CD three events have been planned for
March in Seattle and Tacoma. The first is on March 1 at the Seattle First
Baptist Church in the Hill in Seattle, the second on March 17 at the Triple
Door in downtown Seattle and the third on March 28 at the Broadway Center
for the Performing Arts. To learn more about these events please visit
Bill’s website at [http://www.havemusic.com/littlebill]
www.havemusic.com/littlebill

"Big Blues for Little Bill" is available for purchase by contacting Randy
Oxford at
[mailto:oxfordentertain@aol.com?subject=Order%20my%20CD%20today%21]
oxfordentertain@aol.com or at 253-973-9024. The cost is $15 plus $5 for
shipping and handling. The CD includes the 60 minute music CD, a 12 page
booklet with photos and bios of the musicians who perform on the CD, as
well as a short video interview with Little Bill viewable from most
computers.

For additional information please contact Jane Henderson at 360-832-6840
or
[mailto:jhendersonwa@earthlink.net?subject=I%27d%20like%20more%20information%20about%20the%20CD]
jhendersonwa@earthlink.net.

Don't miss this special opportunity!

Attend the Deep Brain Stimulation For Dystonia Symposium

Co-sponsored by the
Dystonia Medical Research Foundation

& DBSforDystonia Bulletin Board

This event is a special meeting for adults in any stage of the deep
brain stimulation (DBS) process. The agenda was created for those who are
considering DBS as well as those who have undergone the procedure. Family
and friends are also encouraged to attend.

Topics to be addressed tentatively include:

- Update on Dystonia
- DBS: The Latest Clinical Information
- Who Is A Candidate For DBS?
- Preparing For DBS & Relaxation Techniques
- Programming
- Personal Perspectives
- Insurance & Reimbursement
- Advocacy

Registration includes the Friday evening Meet & Greet Reception, all
Saturday sessions, lunch on Saturday, and meeting materials. Registration
does not include hotel stay.

April 17-18, 2009
Meet & Greet Reception, Friday April 17 - 6:00 PM - 8:00PM
DBS Symposium, Saturday April 18 - 8:30 AM - 5:30 PM

Embassy Suites Nashville at Vanderbilt
1811 Broadway
Nashville,Tennessee 37203
615-320-8899

Registration Options:

-Register online at [http://www.rsvpbook.com/event.php?484522]
http://www.rsvpbook.com/event.php?484522
- Call DMRF at 312.755.0198

Are you tweeting yet?

Join the Twitter craze and tweet with the DMRF today!
[http://twitter.com/dmrf]

Important clues...

Each one of us has the ability to provide vital information to researchers
who are studying the complex disorder we all know as dystonia. A tremendous
amount of knowledge can be gained through the analysis of donated brain
tissue from both dystonia-affected persons as well as from those who do not
have this disorder. If you and/or your family members are interested in
learning more about the Brain Donor Program, please e-mail
[mailto:brainbank@dystonia-foundation.org]
brainbank@dystonia-foundation.org or phone 1-800-377-3978 and make sure
to provide your full name, postal address, phone number(s), and your e-mail
address if you have one.

We will postal mail you information and follow-up to answer any questions
that you may have. There is no charge to participate and DMRF partners with
the NICHD Brain &Tissue Bank for Developmental Disorders at the University
of Maryland. They make arrangements for tissue recovery and then store and
maintain the donated tissue, making it available for study by qualified
researchers. The actual donor registration takes places through their
facility but our organization helps to facilitate the process. We realize
that this is a very personal decision, but ask that you consider learning
more about brain donation to help advance dystonia research.

Mark Your Calendars

March 20, 2009 - Unlocking the secrets of dystonia and the music of Billy
McLaughlin (MN) - Parkway Theater

[http://www.billymacmusic.com/tickets.shtml]
http://www.billymacmusic.com/tickets.shtml

March 21, 2009 - Coming Back Alive Concert Film Premiere/Release Party
(MN) - Parkway Theater

[http://www.billymacmusic.com/tickets.shtml]
http://www.billymacmusic.com/tickets.shtml

March 21, 2009 - Freedom to Walk for Dystonia Walkathon (WA) - Marysville
Pilchuck High School Stadium Track

[http://www.geocities.com/sharonstandish@ymail.com/walkathon.html]
www.geocities.com/sharonstandish@ymail.com/walkathon.html

March 26, 2009 - Dystonia Research Update presented by DMRF Science
Officer, Jan Teller, PhD

More details to follow

April 16, 2009 - Watch What Happens! When Omaha Meets New York City (NE) -
Holland Performing Arts Center

[http://www.omahaperformingarts.org/tessitura/production.aspx?perf=2971]
http://www.omahaperformingarts.org/tessitura/production.aspx?perf=2971

April 20, 2009 - 2nd Annual Curtain Call for a Cause (NJ)

[http://www.rsvpbook.com/event.php?446364]
http://www.rsvpbook.com/event.php?446364

April 24, 2009 - Return to Margaritaville 3 (MA) - Danversport Yacht Club

More information to follow!

May 2, 2009 - Freedom Ride for Dystonia (MD) - Old Glory Harley-Davidson

[http://freedomride4dystonia.wordpress.com]
http://freedomride4dystonia.wordpress.com

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.

Tuesday, May 5th will feature an afternoon of Advocacy Training and
Legislative Review followed by dinner at the Hotel Palomarin Washington,
D.C.

On Wednesday, May 6th all Advocates will spend the day on Capitol Hill.
We will conclude on Wednesday by5:00 pm. In addition to sharing your
personal story you will urge NIH (National Institutes of Health) to increase
federal funding for additional medical research to find the cure and to
maintain patient access for effective treatments for dystonia. The DAC
Position Paper, Talking Points and Backgrounder will be sent to you in
advance of your trip.

REGISTRATION
There is no fee for this event but all Advocates need to cover all
transportation and lodging expenses. Dinner on Tuesday night and Breakfast
on Wednesday morning will be provided. As the deadline for the hotel rooms
is March 30, 2009 we ask that you register with DMRF no later than Friday,
March 27.

If you would like to attend, please send an email to dystonia@dystonia-foundation.org and include Advocacy Day in the subject line. You will be sent a registration form to complete. For additional information or questions, please phone the DMRF National Office at 888.346.3673 or locally contact Sally Presti at 301.627.1657.

* 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).

Stay tuned - the new issue of the Dystonia Dialogue should arrive in your
mailboxes soon!

Are you receiving duplicate mailings? If so, please email Emma at epinto@dystonia-foundation.org to let us know.



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 receive updates by text message?

Text DYSTONIA to 90999.

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