DMRF eNews - January 2011

DMRF eNews

January 2011

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

Research... the key to end dystonia

Learning more about the state of dystonia is important to the dystonia
community. Please plan on joining DMRF's own Science Officer, Dr. Jan Teller on
Wednesday, January 26th for an informative, understandable webinar on dystonia
research. By sharing this knowledge you can stay informed about this
debilitating disorder. The webinar will provide you with an overview of the
hottest, most promising areas in dystonia research, giving you information on
what to watch this year for progress. Call and log in to hear the latest in
dystonia research.

Advance registration is encouraged.

For more information and to register [2]click here.

2011 Research Grants are in process

The call for research funding applications was successful. The Medical &
Scientific Advisory Council will be reviewing the applications at the annual
meeting next month. Stay tuned for grant announcements to be made in the
spring.

Patients First

The DMRF worked with the Dystonia Advocacy Network (DAN) to ensure that there
is access to all Food and Drug Administration (FDA) approved medications for
dystonia. In August, FDA approved a new botulinum neurotoxin type A, brand name
Xeomin® for the treatment of adults with cervical dystonia and blepharospasm.
However, because of scheduling, the new treatment would not receive a unique
billing code used by doctors to get reimbursed for payment, until January 2012.
A number of DAN volunteers made key Congressional visits in August to raise
awareness of this issue with Centers for Medicare and Medicaid Services (CMS)
and urge the agency to issue a temporary unique billing code for Xeomin®.
Thanks to those efforts a temporary billing code has been issued by CMS,
helping dystonia patients gain access to all FDA approved treatments without
any difficulties when acquiring the treatment.

The Results are in:

"Survey Says: Dystonia, Doctors, & Care".

The DMRF posted an anonymous online survey about how individuals access and
perceive care for dystonia. One of the top three factors in selecting a doctor
is the doctor's expertise in treating dystonia and/or the number of other
dystonia patients treated at the office or center. To find out the complete
results of the survey,

please [3]click here (see pg 7).

Dystonia Advocacy Day

Dystonia Advocacy Day will soon be here. 2011 Advocacy Day is scheduled for
Tuesday, May 10th and Wednesday, May 11th in Washington, DC. If you are
interested in meeting with your Members of Congress to advocate for the
legislative needs of the dystonia community, then plan on joining us and stay
tuned for more information.

Children & Family Dystonia Symposium

Join us on August 19-21 at the Holiday Inn Chicago Mart Plaza in Chicago, IL
for our most anticipated meeting ever, John H. Menkes Children & Family
Dystonia Symposium. This special meeting is for families affected by dystonia.
The symposium brings families together to learn about dystonia, interact with
experts, and find support among one another by providing sessions for children,
teens, siblings, and parents. This event is named in memory and in honor of
John H. Menkes, MD, founding Scientific Director of the Dystonia Medical
Research Foundation. Mark your calendars and stay tuned for more information in
the coming months.

Pay Tribute to a love one...

...by acknowledging that special day in a loved one's life. Send one of these
attractive greeting cards to a family member or a friend for life's special
occasions.

Order a Pack of 5 (same design) or a

Combo Pack (one card for each 6 designs). We also invite you to make a
contribution for a love one and we can send the card for you. To place your
order,[4] click here.

Are you a runner?

Dystance4Dystonia and Dogs4Dystonia are two programs for the DMRF that help
raise much needed funds and awareness around dystonia. Join us as we come
together in communities across the country, support our journey to a cure.

Are you interested in joining our team of runners to participate in the
following races. For more info, contact [5]Tammy Reed.

04/10/11 Bank of America Shamrock Shuffle

06/05/11 San Diego Marathon

09/18/11 Philadelphia Marahon

10/09/11 Bank of America Chicago Marathon

Coming Soon...

Do you want to be a Face of Dystonia. Look for more information about this
exciting new campaign coming soon.

Come out and join us for some of our upcoming events. The DMRF is fortunate to
have dedicated volunteers around the country who work continuously to promote
dystonia awareness and raise funds for research. The DMRF is grateful for every
volunteer and every effort. The following are some of the events coming to you
soon. If you are interested, stay tuned for more information to come your way.

Fat Tuesday Dinner - Omaha, NE

Hands for Dystonia Piano Recital - Vermont

Freedom to Walk - Washington

Women Who Weld - Omaha, NE

Margaritaville Dance & Fundraiser- Danvers, MA

Tell us how we are doing. We would love to hear your thoughts about the
newsletter. Email us today at[6] enewsletter@dystonia-foundation.org

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

Would you like to receive updates by text message?

Text DYSTONIA to 90999

In This Issue

[13]Research Update Webinar

[14]New Greeting Cards

Upcoming Marathons

Coming Soon...

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

Upcoming Events

1/22 [16]San Diego County SG Mtg

[17]Arkansas Dystonia SG Mtg

1/26 [18]Research Update Webinar

2/05 [19]Rhode Island Dystonia &

[20]Neurological Mov. Disorder [21]Support Group Mtg

2/12 [22]North Bay Dystonia SG Mtg

2/13 [23]Chicago Chapter SG Mtg

4/10 Bank of America Shamrock

Shuffle

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

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

* Please see Terms & Conditions below

[26]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
[27]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. https://www2.gotomeeting.com/register/599425898
3. http://www.dystonia-foundation.org/filebin/Morepdfs/DMRF_DialogueWNTR10_FNL2.pdf
4. https://dystonia.securesites.net/dystonia/pages/merchandise/277.php
5. mailto:treed@dystonia-foundation.org?subject=Marathon
6. mailto:enewsletter@dystonia-foundation.org?subject=Thoughts%20about%20eNews
7. http://dmrfenews.blogspot.com/
8. http://www.myspace.com/thedmrf
9. http://www.youtube.com/user/cemiwire
10. http://www.facebook.com/pages/Dystonia-Medical-Research-Foundation/46820882711
11. http://twitter.com/dmrf
12. http://thedmrf.ning.com/
13. https://www2.gotomeeting.com/register/599425898
14. https://dystonia.securesites.net/dystonia/pages/merchandise/277.php
15. http://dystance4dystonia.org/joomla/index.php?option=com_content&view=article&id=47&Itemid=55
16. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=154&Itemid=89&year=2011&month=01&day=22&title=san-diego-county-sg-meeting&uid=f021ce5204edd4fce9b00bc2d39e6f8a
17. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=159&Itemid=89&year=2011&month=01&day=22&title=arkansas-dystonia-sg-meeting&uid=130e6ecf106278be2263df028f7250ed
18. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=142&Itemid=89&year=2011&month=01&day=26&title=research-update-webinar&uid=78253f152274b15e93d87ff4d731a195
19. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=162&Itemid=89&year=2011&month=02&day=05&title=rhode-island-dystonia-a-neurological-movement-disorder-sg&uid=eb9a1d1cdc8d3e7f9f8eac62b10ba577
20. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=162&Itemid=89&year=2011&month=02&day=05&title=rhode-island-dystonia-a-neurological-movement-disorder-sg&uid=eb9a1d1cdc8d3e7f9f8eac62b10ba577
21. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=162&Itemid=89&year=2011&month=02&day=05&title=rhode-island-dystonia-a-neurological-movement-disorder-sg&uid=eb9a1d1cdc8d3e7f9f8eac62b10ba577
22. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=155&Itemid=89&year=2011&month=02&day=12&title=north-bay-dystonia-sg-meeting&uid=1a3e25dd6a062eb21e022a2e55e912b4
23. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=163&Itemid=89&year=2011&month=02&day=13&title=chicago-chapter-sg-meeting&uid=0871948ea2ee408df3a86bd7a1f23f78
24. http://dystance4dystonia.org/joomla/index.php?option=com_content&view=article&id=46&Itemid=54
25. https://amex.justgive.org/nonprofits/donate.jsp?ein=95-3378526
26. http://www.dystonia-foundation.org/pages/combined_federal_campaign/595.php
27. https://secure.cmax.americanexpress.com/Internet/US/Travel/CTN/Components/CTN_ECOMM_TSO_SERVICE_OFFERED/Terms%20and%20Conditions_112443.html