DMRF eNews - February 2011

DMRF eNews

February 2011

To ensure delivery, please add [1]enewsletter@dystonia-foundation.org to your
address book.

This year marks the 100th Anniversary of Dr. Oppentreim's seminal paper
describing dystonia and the 35th Anniversary of the Foundation. Although this
is not something we want to celebrate - we'd much rather have achieved our goal
of a cure and closed our doors years ago - it is appropriate to look back at
the progress we have made.

The DMRF continues to be a leader in the fight for advancing research. We are
working toward that magical day when no one has to suffer from dystonia and we
know research will get us there. Since our founding, the DMRF has provided over

$25 million in support of over 400 research projects. This past year alone, the
DMRF committed to over 2 million to our science program - including a major
initiative to identify new targets that may lead to the development of new
drugs that will expand the limited menue of treatment options available to
those who are suffering.

The DMRF is working with the National Institutes of Health (NIH),
pharmaceutical and biotech companies, and the scientific and medical
communities to increase the breadth and depth of dystonia related research. We
continue to attract young, bright professional who are dedicated themselves to
uncovering the mysteries of this disease.

We are grateful to everyone in the dystonia community who has worked tirelessly
over the years to provide support and to promote dystonia awareness and
education, and raise funds for research.

Brain Donor Program

The DMRF is pleased to announce that it is now working with the Harvard Brain
Tissue Resource Center at McLean Hospital in Massachusetts (HBTRC) to establish
a private dystonia tissue collection. In seeking a new treatment and ultimately
a cure for dystonia, the Foundation believes that this new partnership will
more effectively assist investigators in their dystonia research.

Giving scientists the opportunity to study dystonia tissue is a crucial step
toward developing improved therapies and a cure for dystonia in all its forms.
Brain donation provides you the unique opportunity to contribute to the field
of dystonia research in a practical way that will assist researchers. Consider
becoming a brain donor and discuss this possibility with your family members.
Your body contains clues vital to solving the puzzle of dystonia. [2]Click here
to learn more.

Seeking volunteers with Cervical Dystonia

Ipsen, manufacturer of Dysport™ (also known in the US as abobotulinumtoxin A),
is working with physicians to conduct a study to determine typical patient
response to this treatment for adults with cervical dystonia. The study,
called ANCHOR - CD (AbobotulinumtoxinA Neurotoxin Clinical & Health Economics
Outcomes Registry in Cervical Dystonia) looks to recruit 400 patients who are
being treated with Dysport and is being conducted through physicians' practices
across the country.

[3]For more information please click here.

Investigators at Mount Sinai School of Medicine are recruiting patients for
three focal dystonia studies:

I. Focal Primary Dystonia: Writer's Cramp, Cervical Dystonia, Blepharospasm,
Spasmodic Dysphonia - The purpose of this experimental study is to investigate
changes in the brain of patients with focal dystonias.

II. Writer’s Cramp – The purpose of this experimental study is to investigate
brain function in people with writer’s cramp (hand dystonia).

III. Spasmodic Dysphonia - The purpose of this study is to investigate the
effect of a novel drug, sodium oxybate, on symptoms and brain changes in
patients with spasmodic dysphonia and essential tremor of voice.

[4]Click here for more information.

For additional information on any of these studies, please call:

(212) 241-0656. Ask to speak to Dr. Kristina Simonyan.

Faces of Dystonia

Do you want to be a Face of Dystonia? Help the DMRF create a mosaic of faces
and stories from the dystonia community by sharing your photo and a few words
about your dystonia experience. Submissions will be collected throughout the
year and posted in a special section of the DMRF webiste.

The DMRF celebrates members of the dystonia comunity and invites everyone to
participate in this special project.[5] Click here to find out more information
about the Faces of Dystonia.

Guitar Performance featuring Billy McLaughlin

The Neurosciences Institute Auditorium Solo Guitar Performance featuring Billy
McLaughling will take place on March 31, 2011 (Billy performs this solo
acoustic guitar conert as part of the performing arts at the Neurosciences
Institute series). [6]Click here for more information about the concert.

If you missed it....

On January 26, 2011, DMRF Science Officer Jan Teller, MA, PhD provided the
latest information on the field of dystonia research and the DMRF Science
Program. This informative webinar provided an overview of the most promising
areas in dystonia research and what to watch this year for progress. If you
would like to view and listen to the webinar recording, please [7]click here.

On February 9, 2011 DMRF member Alex John appeared on a special episode of "The
Doctors" TV show. This was her third time on the show and the episode followed
her Deep Brain Stimulation (DBS) surgery. Watch her progress after being
diagnosed with dystonia. If you missed it, [8]click here to check out brief
scenes from the show.

Workplace Campaigns

The DMRF participates in the world's largest and most successful workplace
charity program, the Combined Federal Campaign (CFC). Through the CFC campaign,
government employees are able to make regular donations in support of the DMRF
through payroll deductions.

If you are a federal government or military employee and would like to support
the work of the DMRF, please take part in the Combined Federal Campaign by
entering the DMRF's name.

Don't know if your agency is taking part in the CFC program?

Contact your Human Resources Department to find out more.

Don't wait - Registration is Now Open!

The Bank of America Shamrock Shuffle is now open for registration. The 8K
course will take place in Chicago on April 10, 2011. Why wait, [9]register
today and join the DMRF in helping spread awareness and raise funds for
dystonia.

The Bank of America Chicago Marathon taking place on October 9, 2011, is open
for registration as well. Don't delay, registration is filling up fast,
[10]register today and support the DMRF.

If you have any questions about the Dystance4Dystonia program, please contact
Tammy Reed at [11]treed@dystonia-foundation.org.

Coming Soon...

Come out and join us for some of our upcoming events. The DMRF is fortunate and
very grateful to have dedicated volunteers around the country who work
tirelessly to promote awareness and fundraise for research. The following are
some of the events coming to you soon.

3/08 Fat Tuesday Dinner - Omaha, NE (Sally Presby)

3/20 Shamrock Marathon - Virginia Beach, VA (Julie Zaia)

4/8-9 Women Who Weld - Omaha, NE (Melinda Eames)

4/10 Bank of America Shamrock Shuffle - Chicago, IL

4/15 Return to Margaritaville - Danvers, MA (Paula Gates)

4/30 Leona Divide 50 Mile - Lake Hughes, CA (Krista Richter)

5/14-15 Nathan Calvert Yard Sale - N. Caldwell, NJ (Sandra Calvert Nathans)

Tell us how we are doing. We would love to hear your thoughts about the
newsletter. Email us today at[12] enewsletter@dystonia-foundation.org

Would you like to access the newsletter 24/7? [13]dmrfenews.blogspot.com

Would you like to receive updates by text message?

Text DYSTONIA to 90999

Coming Soon...

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

Upcoming Events

3/05 [20]Rhode Island Dystonia SG

3/06 [21]Greater Washington DC SG

3/18 [22]Dystonia SG of Spokane

4/10 [23]Chicago Chapter SG

[24]Bank of America Shamrock Shuffle

4/15 [25]Return To Margaritaville

5/21 [26]North Bay Dystonia SG

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

[28]Are you an American Express card holder looking for additional ways to
support the work of the DMRF?

* Please see Terms & Conditions below

[29]Are you a federal government or military employee looking to support the
work of the DMRF?

Dystonia Medical Research Foundation One East Wacker Drive, Suite 2810,
Chicago, IL 60601-1905

Phone (312) 755-0198 Toll Free (800) 377-3978 Fax (312) 803-0138

Web www.dystonia-foundation.org Email dystonia@dystonia-foundation.org

* Terms and Conditions for the Membership Rewards program apply. Visit
[30]membershiprewards.com/terms for more information.

Dollar donations are tax deductible the full extent allowed by law however,
donations of Membership Rewards points are not tax deductible.Please note:
American Express will deduct a transaction fee of 2.25% from the donation to
cover processing costs. The charities will receive your donation amount, minus
the 2.25% American Express processing fee, from our partner JustGive. This
transaction fee is similar to or less than the processing fee the charity would
pay if you were to charge your donation with your American Express® Card
through any other means (i.e., over the phone to the charity, through the
charity's website, etc.). This transaction fee only applies to monetary
donations placed on your American Express® Card and not to donations that are
made via the redemption of Membership Rewards points. Dollar donations are tax
deductible the full extent allowed by law however, donations of Membership
Rewards points are not tax deductible.Please consult your tax advisor on the
deductibility of a donation of Membership Rewards points.

References

1. mailto:enewsletter@dystonia-foundation.org
2. http://www.dystonia-foundation.org/pages/become_a_brain_donor/162.php
3. http://www.dystonia-foundation.org/pages/volunteers_with_cervical_dystonia_needed_for_study/614.php
4. http://www.dystonia-foundation.org/pages/researchers_need_volunteers_for_dystonia_studies/616.php
5. http://www.dystonia-foundation.org/pages/faces/611.php
6. http://www.dmrfevents.org/event.php?475078
7. http://www.dystonia-foundation.org/pages/dystonia_research_update_webinar_01_26_11/613.php
8. http://thedoctorstv.com/main/show_page/700
9. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=166&Itemid=89&year=2011&month=04&day=10&title=bank-of-america-shamrock-shuffle-2011&uid=7eab4757db66442cdd04098e15ec63e4&catids=37
10. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=164&Itemid=89&year=2011&month=10&day=09&title=bank-of-america-chicago-marathon-2011&uid=d3d3cace7935275bebc1ad13df9ccdf8
11. mailto:treed@dystonia-foundation.org?subject=Bank%20of%20America%20Shamrock%20Shuffle
12. mailto:enewsletter@dystonia-foundation.org?subject=Thoughts%20about%20eNews
13. http://dmrfenews.blogspot.com/
14. http://www.myspace.com/thedmrf
15. http://www.youtube.com/user/cemiwire
16. http://www.facebook.com/pages/Dystonia-Medical-Research-Foundation/46820882711
17. http://twitter.com/dmrf
18. http://thedmrf.ning.com/
19. http://dystance4dystonia.org/joomla/index.php?option=com_content&view=article&id=47&Itemid=55
20. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=175&Itemid=89&year=2011&month=03&day=05&title=rhode-island-dystonia-sg-meeting&uid=c8d49a8769865fea7b1c212b21613ffd
21. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=174&Itemid=89&year=2011&month=03&day=06&title=greater-washington-dc-dystonia-sg-meeting&uid=b1e7747ecec43fc07af63eeaa8bfb4fa
22. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=178&Itemid=89&year=2011&month=03&day=18&title=dystonia-support-group-of-spokane&uid=24dc2bbe86749a8fcee7ab482c542f14
23. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=171&Itemid=89&year=2011&month=04&day=10&title=chicago-chapter-sg-meeting&uid=290cf7bf36148940acc5b02e7dd438e1
24. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=166&Itemid=89&year=2011&month=04&day=10&title=bank-of-america-shamrock-shuffle-2011&uid=7eab4757db66442cdd04098e15ec63e4&catids=37
25. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=179&Itemid=89&year=2011&month=04&day=15&title=return-to-margaritaville&uid=cebbb5b12ea9d09a26346f15664fff6e
26. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=156&Itemid=89&year=2011&month=05&day=21&title=north-bay-dystonia-sg-meeting&uid=7521020e6a567162de21e822baeedc9e
27. http://dystance4dystonia.org/joomla/index.php?option=com_content&view=article&id=46&Itemid=54
28. https://amex.justgive.org/nonprofits/donate.jsp?ein=95-3378526
29. http://www.dystonia-foundation.org/pages/combined_federal_campaign/595.php
30. https://secure.cmax.americanexpress.com/Internet/US/Travel/CTN/Components/CTN_ECOMM_TSO_SERVICE_OFFERED/Terms%20and%20Conditions_112443.html