DMRF eNews - November 2010

DMRF eNews
November 2010 - to ensure delivery, please add
[12]enewsletter@dystonia-foundation.org to your address book.

Dystonia & Managing Holiday Stress

The holiday season is a time of parties, shopping, decorating, and time spent
with family and friends. While full of excitement, this can also be a time of
increased stress which may exacerbate or worsen dystonia symptoms. Please join
us on Wednesday, November 3 at 6:00pm central time for a webinar on Holiday
Stress. In this webinar, moderated by Dr. Bryan Bernard, Neuropsychologist at
Rush University Medical Center, you will learn more about coping with stress
and techniques to manage it.

To register for the webinar, please click [13]here.

Mid-Atlantic Regional Dystonia Conference
The Greater Washington DC Dystonia Support Group invites you to attend the
Mid-Atlantic Regional Conference on November 14, 9:00am-5:00pm.

Holy Cross Hospital
1500 forest Glen Road
Silver Spring, MD

Join us for a special one day conference where some of the top experts in the
field will present the latest dystonia research, treatments and much more. We
are pleased to

offer you this conference at no charge with lunch included.

Pre-registration is required!

Registration Deadline: November 7, 2010

For more information or to register please contact Elena at
[14]dystonia10@md.net or 703.521.7918.


The Power of Your Story

Using Your Experience to Promote Dystonia Awareness

Each of us who have been touched by dystonia has a story. Each of these stories
is an important and powerful tool to educate the public about dystonia.

These are just a few examples of how you can share your story to improve
dystonia awareness:

* Share your experiences on any of the DMRF's many online social media
websites (Facebook, MySpace, Ning, YouTube, and the Online Dystonia Bulletin
Board). You'll receive support if you are struggling and provide comfort to
others who may be going through a difficult period.

* Contact a local newspaper, radio, or television outlet and tell them you
have a terrific idea for a story: Dystonia and how it affects your life. Don't
give up if you don't succeed right away.

* Offer to speak to youth or community groups about dystonia and your
dystonia journey. Many clubs are eager for guest speakers and new topics.

* Consider sharing your story to help greater awareness to dystonia and the
need for a cure.

DMRF member Janice Nachbar educates Continental Airlines employees. She
wrote to Continental Airlines about her daughter Joanna Manusov's (left, with
rightfielder Nick Swisher) experiences traveling with dystonia, and the letter
was published in Continental's employee newsletter. The article will reach
45,000 Continental employees.

Click here to read the article [15]"My Daughter Joanna".

DMRF member Jason Dunn (left) appeared in a television program called
Extraordinary Humans: Muscles on the National Geographic channel which
premiered this past June during Dystonia Awareness Week 2010. Jason shared how
generalized dystonia affects his daily life.

Twelve-year-old Aidan Grasmich of Palmer, Alaska shared his story with the
Frontiersman newspaper earlier this year. Aidan (left) is pictured with parents
Sharry and Chad Grasmick, Sisters Jade and Mai, and family friend and longtime
DMRF volunteer Dee Linde during a meeting in Portland, Oregon.

DMRF member Pat Brogan (left) and his service dog Hutch made a presentation
about dystonia to a 12th grade anatomy and physiology class at Muhlenberg High
School in Laureldale, Pennsylvannia. Pat and Hutch are pictured with teacher
Rich Kolka and guidance counselor Tim Potopa.

DMRF support groups promote dystonia awareness year round thorough grassroots
events and activities.

Dystonia Awareness Week is June 5-11, 2011
It's not too early to make plans to promote dystonia awareness in 2011 and
participate in Dystonia Awareness Week along with DMRF volunteers throughout
the country.

For more information about how you can help promote awareness, contact, your
local support group or the DMRF at 800-377-3978 or
dystonia@dystonia-foundation.org.

Upcoming Events
[16]

11/07/10 [17]ING New York City Marathon
11/08/10 [18]Dine for Dystonia (Freehold, NJ)
11/13/10 [19]Dystance4Dystonia Walk (Santa Clarita, CA)
[20]Carson's Community Day (Nationwide)
[21]North Bay CA SG Meeting
[22]New Mexico Dystonia SG Meeting
[23]Fairfield, CA Dystonia/ST SG Meeting
[24]San Diego County SG Meeting
11/14/10 [25]Mid-Atlantic Regional Conference
11/15/10 [26]Palm Springs California SG Meeting
11/21/10 [27]Philadelphia, PA Marathon
11/28/10 [28] Help Find a Cure for Dystonia (West Hazleton, PA)
12/04/10 [29]Southeast PA DMRF SG Meeting
12/11/10 [30]Central Jersey Dystonia Support & Action Group
[31]
[32]

For information about these or other events, please email us at
[33]enewsletter@dystonia-foundation.org.


Tell us how we are doing. We would love to hear your thoughts about the
newsletter. Email us today at

[1]enewsletter@dystonia-foundation.org

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

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

Would you like to access the newsletter 24/7?

[4]dmrfenews.blogspot.com

Would you like to receive updates by text message?

Text DYSTONIA to 90999.

Join us on one of our social networks:

Contact Information

One East Wacker Drive, Suite 2810
Chicago, Illinois 60601
800.377.3978
[10]enewsletter@dystonia-foundation.org
[11]www.dystonia-foundation.org
© 2010 DMRF

DMRF eNews - October 2010

DMRF eNews
October 2010 - to ensure delivery, please add
[12]enewsletter@dystonia-foundation.org to your address book.

Dystonia International Patient Registry- Register Soon!

Please join us on Tuesday, October 5th, at 6pm central time for an informative
webinar to discuss the Dystonia International Patient Registry (DIPR), founded
by Tyler's Hope for A Dystonia Cure and supported by the Dystonia Medical
Research Foundation.

The goal of this registry is to develop a comprehensive list of all individuals
who carry any of the dystonia gene deletions, specifically the DYT1 gene
deletion and their family members worldwide. It is the first and only dystonia
registry to attempt to capture this information to assist researchers in
finding a cure to dystonia.

In this webinar, moderated by the DIPR's Medical Advisor Dr. Michael Okun, you
will learn more about patient registries and why they are important, along with
more specific information about the DIPR.

To register for the webinar, please click [13]here.

Dystonia Coalition News

DMRF is pleased to announce the funding of two new Career Development Awards in
partnership with the Dystonia Coalition. Career Development Awards are awarded
to young clinical investigators to help them establish careers in dystonia
research.

To learn more about these awards, please click [14]here.

To learn more about the Dystonia Coalition, click [15]here.

You can [16]help make a difference in dystonia research!

Participating in Clinical Trials

Have you ever thought about participating in a clinical trial? Patients play an
invaluable role to researchers carrying out these studies-without you it would
not be possible!

To learn more about clinical trials and how to find trials that may be
recruiting, please click [17]here.

Dystonia & Managing Holiday Stress

The holiday season is a time of parties, shopping, decorating, and time spent
with family and friends. While full of excitement, this can also be a time of
increased stress which may exacerbate or worsen dystonia symptoms. Please join
us on Wednesday, November 3 at 6:00pm central time for a webinar on Holiday
Stress. In this webinar, moderated by Dr. Bryan Bernard, Neuropsychologist at
Rush University Medical Center, you will learn more about coping with stress
and techniques to manage it.

To register for the webinar, please click [18]here.

Available Now!
Twisted - Award-winning documentary by Laurel Chiten featuring several DMRF
members, provides an inside glimpse into what it means to live with dystonia.
Proceeds from your purchase will support the DMRF research programs.

These newly available copies of Twisted were made possible by a generous gift
from Ira Tritt in memory of his beloved wife, Shari Farber-Tritt.

Get your copy of Twisted today, please click [19]here.

Carson Pirie Scott Community Day - DMRF is partnering with the Bon-Ton family
of stores (Bon-Ton, Bergner's, Boston Store, Parisian, Elder-Beerman,
Herberger's, Younkers) through the sale of coupon booklets, good toward store
merchandise. With 100% of our booklet sales benefiting dystonia. Each coupon
booklet is on sale for $5.

If you would like to make a purchase, please click [20]here.
Look for the coupon booklet under Special Event.
Upcoming Events

[21]
10/09/10 [22]Alabama Dystance4Dystonia Run
[23]Central Virginia Dysphonia-Dystonia SG Meeting
10/10/10 [24]Bank of America Chicago Marathon (Chicago, IL)
10/14/10 [25]Central Iowa Dystonia SG Meeting
10/16/10 [26]Baltimore/John Hopkins SG Meeting
[27]PA Dogs4Dystonia (Kingston, PA)
10/17/10 [28]Portland, OR & SW Washington SG Meeting
10/24/10 [29]6th Annual Basket Bash (Chicago, IL)
10/28/10 [30] Annual NJ Tricky Tray (Woodland Park, NJ)
10/30/10 [31]Tulsa Fun Run (Tulsa, OK)
11/13/10 [32]Dystance4Dystonia Walk (Santa Clarita, CA)
[33]Carson's Community Day (Nationwide)
[34]North Bay CA SG Meeting
[35]New Mexico Dystonia SG Meeting
[36]Fairfield, CA Dystonia/ST SG Meeting
11/14/10 [37]Mid-Atlantic Regional Conference
11/15/10 [38]Palm Springs California SG Meeting
11/28/10 [39] Help Find a Cure for Dystonia (West Hazleton, PA)
12/04/10 [40]Southeast PA DMRF SG Meeting
[41]
[42]

For information about these or other events, please email us at
[43]enewsletter@dystonia-foundation.org.

Tell us how we are doing. We would love to hear your thoughts about the
newsletter. Email us today at

[1]enewsletter@dystonia-foundation.org

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

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

Would you like to access the newsletter 24/7?

[4]dmrfenews.blogspot.com

Would you like to receive updates by text message?

Text DYSTONIA to 90999.

Join us on one of our social networks:


Contact Information

One East Wacker Drive, Suite 2810
Chicago, Illinois 60601
800.377.3978
[10]enewsletter@dystonia-foundation.org
[11]www.dystonia-foundation.org
© 2010 DMRF

DMRF eNews - September 2010

DMRF eNews
September 2010 - to ensure delivery, please add
[13]enewsletter@dystonia-foundation.org to your address book.

September is a month when we all focus on education. With back to school
activities for many, education is never far from our minds. It is no different
at the DMRF, for we understand that staying on top of dystonia news and
information is very important. In addition to our website and our educational
materials, the DMRF hosts a number of events for our members.

Attend the Western Regional Dystonia Symposium
Join us for the Western Regional Symposium on October 2nd. This great event
will allow members of the dystonia community the opportunity to learn more
about the disorder, network, and share their experiences.

Hilton Pasadena

168 S. Los Robles Avenue

Pasadena, CA 91101

Reception and Dinner
There will be a special reception and welcome dinner at 6:30 p.m. on Friday,
October 1st, at the Hilton Pasadina Hotel. We are extremely fortunate to have
guitarist/musician and DMRF Awareness Ambassador BILLY McLAUGHLIN in
attendance. Not only will he share his story of living with dystonia, he will
also be performing!The cost to attend the reception and the dinner is $20.

Conference
The conference sessions will start on Saturday, October 2nd, this includes a
continental breakfast, lunch and all materials. The registration fee for the
sessions is $25 and is separate from the dinner and concert.
Advanced registration is required and you are responsible for making your own
hotel reservations.

For more detailed information, please [14]click here.

To register, call: 800-377-DYST (3978) or [15]click here.

Mid-Atlantic Regional Dystonia Conference
The Greater Washington DC Dystonia Support Group invites you to attend the
Mid-Atlantic Regional Conference on November 14, 9:00am-5:00pm.

Holy Cross Hospital
1500 Forest Glen Road
Silver Spring, MD

Join us for a special one day conference where some of the top experts in the
field will present the latest dystonia research, treatments and much more. We
are pleased to offer you this conference at no charge with lunch included.

Pre-registration is required!

For more information or to register please contact Elena at
[16]dystonia10@md.net or 703.521.7918.

Registration Deadline: November 7, 2010

Make A Difference in Dystonia Research
You can make a difference!

Please join us on Tuesday, October 5th, at 6pm central time for an informative
webinar to discuss the Dystonia International Patient Registry (DIPR), founded
by Tyler's Hope for A Dystonia Cure and supported by the Dystonia Medical
Research Foundation.

The goal of this registry is to develop a comprehensive list of all individuals
who carry any of the dystonia gene deletions, specifically the DYT1 gene
deletion and their family members worldwide. It is the first and only dystonia
registry to attempt to capture this information to assist researchers in
finding a cure to dystonia.

In this webinar, moderated by the DIPR's Medical Advisor Dr. Michael Okun, you
will learn more about patient registries and whey they are important, along
with more specific information about the DIPR registry and how you can help
make a difference in dystonia research.

To register for the webinar, please click on this link:
[17]https://www2.gotomeeting.com/register/131489003.

If you have questions about the webinar, please contact Jody Roosevelt at
[18]jroosevelt@dystonia-foundation.org.

DMRF Dogs4Dystonia Virtual Dog Walk
Join the DMRF for the 1st Annual DMRF Dogs4Dystonia Virtual Dog Walk.

Everyone who walks their dog can participate and raise much needed funds for
dystonia research!

How does it work? We are asking our dystonia family to walk their dogs during
the month of September and raise a minimum of $75 per dog in support of the
DMRF. Ask your family and friends to show their support by making a donation in
honor of your four legged friend.

All virtual Dogs4Dystonia participants will receive a "Thank You" package that
includes a Dogs4Dystonia bandana and ID tag for your dog.

The Virtual Walk is open for the entire month of September- any time, day or
night - you and your dog have the flexibility to walk when you want.The
Dogs4Dystonia Virtual Dog Walk is a great way to not only spend quality time
with your canine companion, it is also a great way to support a phenomenal
cause. Sign up to participate today!

To participate in the Dogs4Dystonia Virtual Dog Walk [19]click here.

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 Foundations name and/or code #10592 on your pledge card.

Don't know if your agency is taking part in the CFC Program? Contact your Human
Resources Department to find out more.

Survey
Share Your Thoughts!

How was your last doctor’s visit? Are you looking for a way to share how your
visit went? Share your thoughts today.

Complete a short survey on dystonia, doctors, & care.
Click here: [20]https://www.surveymonkey.com/s/dystoniacare

Upcoming Events
09/01/10 [21]1st Annual DMRF Dogs4Dystonia Virtual Dog Walk
09/11/10 [22]Colorado-Denver SG Meeting
[23]New Mexico Dystonia SG Meeting
[24]Greater Dallas Dystonia/Dysphonia SG Meeting
09/12/10 [25]Central Connecticut Dystonia SG Meeting
09/19/10 [26]Greater Washington, DC SG Meeting
[27]RNR Philadelphia 1/2 Marathon
09/25/10 [28]San Diego County SG Meeting[29]
[30]Southeast, PA SG Meeting
09/26/10 [31]NJ Dogs4Dystonia Dog Walk (Freehold, NJ)
09/27/10 [32]RI Dystonia & Neurological Mov. Dis. SG Meeting
10/01/10 [33]Western Regional Symposium
10/02/10 [34]Quad-City Dystonia SG Meeting
10/03/10 [35]St. Louis Walkathon (St. Louis, MO)
[36]Medtronics Twin Cities Marathon (Minneapolis, MN)
10/04/10 [37]DC Golf and Tennis Classic
10/09/10 [38]Alabama Dystance4Dystonia Run
10/10/10 [39]Bank of America Chicago Marathon (Chicago, IL)
10/16/10 [40]Baltimore/John Hopkins SG Meeting
[41]PA Dogs4Dystonia (Kingston, PA)
10/24/10 [42]6th Annual Basket Bash (Chicago, IL)
10/28/10 [43]Annual NJ Tricky Tray (West Paterson, NJ)
10/30/10 [44]Tulsa Fun Run (Tulsa, OK)
11/13/10 [45]Dystance4Dystonia Walk (Santa Clarita, CA)
[46]North Bay CA SG Meeting
[47]New Mexico Dystonia SG Meeting
[48]Fairfield, CA Dystonia/ST SG Meeting

For information about these or other events, please
[49]enewsletter@dystonia-foundation.org.

References

1. http://www.dystonia-foundation.org/pages/merchandise/277.php
2. http://www.dystonia-foundation.org/pages/merchandise/277.php
3. mailto:enewsletter@dystonia-foundation.org?subject=Feedback%20about%20eNews
4. http://dystance4dystonia.org/joomla/index.php?option=com_content&view=article&id=47&Itemid=55
5. http://dystance4dystonia.org/joomla/index.php?option=com_content&view=article&id=46&Itemid=54
6. http://dmrfenews.blogspot.com/
7. http://www.facebook.com/inbox/?ref=mb#/pages/Dystonia-Medical-Research-Foundation/46820882711
8. http://www.myspace.com/thedmrf
9. http://thedmrf.ning.com/
10. http://twitter.com/dmrf
11. mailto:enewsletter@dystonia-foundation.org?subject=Questions,%20comments%20or%20concerns
12. http://www.dystonia-foundation.org/
13. mailto:enewsletter@dystonia-foundation.org
14. http://www.dystonia-foundation.org/pages/attend_the_western_regional_dystonia_symposium/571.php
15. http://www.dmrfevents.org/event.php?458954
16. mailto:dystonia10@md.net?subject=Mid-Atlantic%20Regional%20Conference
17. https://www2.gotomeeting.com/register/131489003
18. mailto:jroosevelt@dystonia-foundation.org?subject=DiPR%20info
19. http://dystance4dystonia.org/joomla/index.php?option=com_content&view=article&id=77&Itemid=91
20. https://www.surveymonkey.com/s/dystoniacare
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22. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=112&Itemid=89&year=2010&month=09&day=11&title=colorado-denver-sg-meeting&uid=6f58aff8f38eacb717ce522fbcffad2f
23. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=92&Itemid=89&year=2010&month=09&day=11&title=new-mexcio-dystonia-sg-meeting&uid=1dc93a986f03dd52178226e9ef01c8b3
24. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=116&Itemid=89&year=2010&month=09&day=11&title=greater-dallas-dystoniadysphonia-sg-meeting&uid=5a51751e9ccf9036816afa38985ac4f2
25. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=64&Itemid=89&year=2010&month=09&day=25&title=southeast-pa-sg-meeting&uid=9e1972a868a109f5c3254de82b53266d
26. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=102&Itemid=89&year=2010&month=09&day=19&title=greater-washington-dc-dystonia-sg-meeting&uid=29371a002768eeff2e0c0cb5f001d311
27. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=15&Itemid=89&year=2010&month=09&day=19&title=rnr-philadelphia-12-marathon&uid=4becdfa0f9c0515c6bc6a631db72c912
28. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=117&Itemid=89&year=2010&month=09&day=25&title=san-diego-county-sg-meeting&uid=983b4a2df7ce0dfb528b842362db3dce
29. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=64&Itemid=89&year=2010&month=09&day=25&title=southeast-pa-sg-meeting&uid=9e1972a868a109f5c3254de82b53266d
30. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=64&Itemid=89&year=2010&month=09&day=25&title=southeast-pa-sg-meeting&uid=9e1972a868a109f5c3254de82b53266d
31. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=33&Itemid=89&year=2010&month=09&day=26&title=nj-dogs4dystonia-dog-walk&uid=668c6f6f98953f1092b05b40c2aa5728
32. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=113&Itemid=89&year=2010&month=09&day=27&title=rhode-island-dystonia-a-neurological-movement-disorder-sg&uid=6f40479909fa8d1356806d3e6f3df8d7
33. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=49&Itemid=89&year=2010&month=10&day=02&title=western-regional-symposium&uid=fb7ad822c07989ba1eff5450c196c422
34. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=110&Itemid=89&year=2010&month=10&day=02&title=quad-city-dystonia-sg-meeting&uid=bf7ac67bae5aacdda0be3213de5aec35
35. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=105&Itemid=89&year=2010&month=10&day=03&title=qmoving-forwardq-4th-annual-st-louis-dystonia-walk-a-thon&uid=30eebe76b967f20d87af2e9c7f46a6a9
36. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=96&Itemid=89&year=2010&month=10&day=03&title=medtronic-twin-cities-marathon&uid=379e1720caadc454d64d3c74ab90f3b1
37. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=107&Itemid=89&year=2010&month=10&day=04&title=dc-golf-and-tennis-classic&uid=84485cff044bd9977b0fc837a73114d0
38. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=103&Itemid=89&year=2010&month=10&day=09&title=alabama-dystance4dystonia-run&uid=870818d71aa02e48c4b5a91951829781
39. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=17&Itemid=89&year=2010&month=10&day=10&title=bank-of-america-chicago-marathon&uid=6ad1bf8969853341e2829586401ab13e
40. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=53&Itemid=89&year=2010&month=10&day=16&title=baltimorejohns-hopkins-support-group-meeting&uid=290d972c71314b4349d53fb5199f4f1b
41. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=104&Itemid=89&year=2010&month=10&day=16&title=pa-dogs4dystonia-walk-a-thon-kingston-pa&uid=99e167b0db48b840f1dc1197c772aec5
42. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=106&Itemid=89&year=2010&month=10&day=24&title=6th-annual-basket-bash&uid=4d6937907ed85f8ad771bd7da4c7af93
43. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=34&Itemid=89&year=2010&month=10&day=28&title=annual-new-jersey-tricky-tray&uid=a3ad21371ae59c55ecf0fcac8b64d758
44. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=82&Itemid=89&year=2010&month=10&day=30&title=tulsa-run&uid=51b4314392afb292ad1aad23de6f3b7a
45. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=115&Itemid=89&year=2010&month=11&day=13&title=santa-clarita-ca-dystance4dystonia-run&uid=e45d9f6bca62c8ad93e84c95d98dcea5
46. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=62&Itemid=89&year=2010&month=11&day=13&title=north-bay-ca-support-group-meeting&uid=8819bc40aa45873fad1b41cafe9db6bf
47. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=93&Itemid=89&year=2010&month=11&day=13&title=new-mexico-dystonia-sg-meeting&uid=1c17dd87c4a4650402d97bbb0b67cddd
48. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalevent.detail&evid=43&Itemid=89&year=2010&month=11&day=13
49. mailto:enewsletter@dystonia-foundation.org?subject=I%27d%20like%20more%20information%20on%20events

Tell us how we are doing. We would love to hear your thoughts about the
newsletter. Email us today at

[3]enewsletter@dystonia-foundation.org

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

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

Would you like to access the newsletter 24/7?

[6]dmrfenews.blogspot.com

Would you like to receive updates by text message?

Text DYSTONIA to 90999.

Join us on one of our social networks:

Contact Information

One East Wacker Drive, Suite 2810
Chicago, Illinois 60601
800.377.3978
[11]enewsletter@dystonia-foundation.org
[12]www.dystonia-foundation.org
© 2010 DMRF

DMRF eNews - August 2010

DMRF eNews
August 2010 - to ensure delivery, please add
[11]enewsletter@dystonia-foundation.org to your address book.

On July, 13th the Dystonia Advocacy Network (DAN) unveiled its new website
[12]www.dystonia-advocacy.org. This site is designed to be the online home of
dystonia advocates across the country. The site provides comprehensive
information about our legislative agenda, the DAN member organizations, and how
to become a dystonia advocate. You'll also find tools for advocates, such as a
guide on how to call congressional offices or meet with elected officials. By
far the most innovative feature of the site is the “Legislative Alerts”
section. This allows any interested dystonia advocate to easily contact their
congressional offices and respond to “Action Alerts” with just a few clicks of
a mouse.

Dystonia Advocate Testifies before Senate Subcommittee

On June 23rd, the Senate Defense Appropriations Subcommittee held its first
hearing on the FY 2011 Defense Appropriations Bill. This legislation contains
the exclusive list of conditions eligible for study through the Department of
Defense (DOD) Peer-Reviewed Medical Research Program that dystonia was added to
in FY 2010. The Subcommittee requested that a handful of witnesses be present
to testify, including a dystonia representative. DMRF member and advocacy day
veteran Kathy Rentfrow appeared before the Subcommittee and presented her story
as a military spouse and the parent of a child with dystonia. She urged the
Subcommittee to keep dystonia on the eligible conditions list in FY 2011. Both
the Chairman of the Subcommittee, Senator Daniel Inouye (D-HI), and the Ranking
Member, Thad Cochran (R-MS), agreed to “seriously consider her request”.

You can view Kathy’s remarks at the link below (she is the 3rd speaker):

[13]http://appropriations.senate.gov/webcasts.cfm?method=webcasts.view&id=8951a
a36-cc0c-463e-8464-cb08b2e75c73

DMRF President Testifies Before the Food and Drug Administration

On June 29th, the Food and Drug Administration (FDA) held a hearing on rare
diseases and its processes for approving rare disease treatments. Art Kessler,
the Foundation’s President, appeared before the FDA panel and discussed
dystonia. Art’s presentation included before and after video clips of patients
who received botulinum toxin injections or deep brain stimulation (DBS). He
also spoke about his own personal story of the life-changing impact of DBS as
someone who has undergone procedure. Art informed the panel that their efforts
to expand access to treatments like DBS for rare disease populations were being
undermined because many insurers deny coverage for the procedure. Art called on
FDA to work with other government and private entities to address this barrier
to patient access in a timely and appropriate manner.

Three Dystonia Representative's Named to DOD's New Dystonia Panel

On June 9th, three members of the dystonia community Dee Linde (left), M.A.,
CPhT, Peter Cohen, Esq., and Aaron Lewis, M.D., were named to the DOD
Peer-Reviewed Medical Research Program’s new Dystonia Panel as Consumer
Reviewers. The appointment of these individuals follows the addition of
dystonia to the DOD programs FY 2010 list of conditions eligible for research
earlier this year. The fact that these individuals have been added to the panel
is a strong indication that the DOD is interested in actively pursuing research
in this area. The responsibility of these Consumer Reviewers will be to
compliment the perspective of the Scientific Reviewers on the panel by
evaluating dystonia research grant applications for the possible impact of the
proposed work as it relates to the potential for improved medical care and
enhanced quality of life. The DMRF was proud to nominate and work with these
outstanding candidates in preparing their applications for these appointments.

Want to become a dystonia advocate?

The DMRF relies on its grassroots network of advocates to educate Members of
Congress about dystonia, raise critical awareness, and secure support for
crucial legislative efforts which benefit dystonia patients. As a dystonia
advocate you can decide your own level of involvement. You can simply respond
to Action Alerts, or you can attend events like Advocacy Day in Washington, DC,
the choice is yours. If you are interested in becoming a dystonia advocate,
please contact the DMRF's Grassroots Coordinator, Dane Christiansen at
[14]dchristiansen@dystonia-foundation.org.

New Merchandise Item!

Proudly sport this DMRF cap, priced at only $15, and show your support while
raising awareness.

This cap is made of lightweight brushed cotton twill with a low profile soft
lining. It has a self fabric closure with ring buckle and pre-curved bill. It
is one size fits all and is perfect for everyday wear while you're out at a
ball game or just enjoying the sun.

[15]Click here to order your DMRF cap today!

Upcoming Events
8/01/10 [16]RNR Chicago 1/2 Marathon
8/14/10 [17]North Bay California SG Meeting
8/16/10 [18]2nd Annual Minnesota Dystonia Golf Classic
8/21/10 [19]Madison Mini-Marathon (Madison, WI)
8/28/10 [20]Fairfield, California SG Meeting
9/11/10 [21]New Mexico Dystonia SG Meeting
9/19/10 [22]Greater Washington, DC SG Meeting
[23]RNR Philadelphia 1/2 Marathon
9/25/10 [24]Southeast, PA SG Meeting
9/26/10 [25]NJ Dogs4Dystonia Dog Walk (Freehold, NJ)
10/02/10 [26]Western Regional Symposium
10/03/10 [27]St. Louis Walkathon (St. Louis, MO)
[28]Medtronics Twin Cities Marathon (Minneapolis, MN)
10/04/10 [29]DC Golf and Tennis Classic
10/09/10 [30]Alabama Dystance4Dystonia Run
10/10/10 [31]Bank of America Chicago Marathon (Chicago, IL)
10/16/10 [32]Baltimore/John Hopkins SG Meeting
[33]PA Dogs for Dystonia (Kingston, PA)
10/24/10 [34]6th Annual Basket Bash (Chicago, IL)
10/28/10 [35]Annual NJ Tricky Tray (West Paterson, NJ)
10/30/10 [36]Tulsa Fun Run (Tulsa, OK)

For information about these or other events, please
[37]enewsletter@dystonia-foundation.org.

References

1. mailto:enewsletter@dystonia-foundation.org?subject=Feedback%20about%20eNews
2. http://dystance4dystonia.org/joomla/index.php?option=com_content&view=article&id=47&Itemid=55
3. http://dystance4dystonia.org/joomla/index.php?option=com_content&view=article&id=46&Itemid=54
4. http://dmrfenews.blogspot.com/
5. http://www.facebook.com/inbox/?ref=mb#/pages/Dystonia-Medical-Research-Foundation/46820882711
6. http://www.myspace.com/thedmrf
7. http://thedmrf.ning.com/
8. http://twitter.com/dmrf
9. mailto:enewsletter@dystonia-foundation.org?subject=Questions,%20comments%20or%20concerns
10. http://www.dystonia-foundation.org/
11. mailto:enewsletter@dystonia-foundation.org
12. http://www.dystonia-advocacy.org/
13. http://appropriations.senate.gov/webcasts.cfm?method=webcasts.view&id=8951aa36-cc0c-463e-8464-cb08b2e75c73
14. mailto:dchristiansen@dystonia-foundation.org.?subject=Interested%20in%20Advocacy
15. http://www.dystonia-foundation.org/pages/merchandise/277.php
16. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=13&Itemid=89&year=2010&month=08&day=01&title=rnr-chicago-12-marathon&uid=b56d94196ade45390331925750e505f6
17. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=61&Itemid=89&year=2010&month=08&day=14&title=north-bay-ca-support-group-meeting&uid=8304527f4eb40c265f056d44f8ae5814
18. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=21&Itemid=89&year=2010&month=08&day=16&title=2nd-annual-minnesota-dystonia-golf-classic&uid=ae832f5d9b92889ddcddd75e7350e8db
19. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=79&Itemid=89&year=2010&month=08&day=21&title=madison-mini-marathon&uid=8a7e512913a87fa8b3a336988b128708
20. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=57&Itemid=89&year=2010&month=08&day=28&title=fairfield-ca-support-group-meeting&uid=c762c5b4dbb954e16ceb405a464c06bc
21. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=92&Itemid=89&year=2010&month=09&day=11&title=new-mexcio-dystonia-sg-meeting&uid=1dc93a986f03dd52178226e9ef01c8b3
22. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=102&Itemid=89&year=2010&month=09&day=19&title=greater-washington-dc-dystonia-sg-meeting&uid=29371a002768eeff2e0c0cb5f001d311
23. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=15&Itemid=89&year=2010&month=09&day=19&title=rnr-philadelphia-12-marathon&uid=4becdfa0f9c0515c6bc6a631db72c912
24. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=64&Itemid=89&year=2010&month=09&day=25&title=southeast-pa-sg-meeting&uid=9e1972a868a109f5c3254de82b53266d
25. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=33&Itemid=89&year=2010&month=09&day=26&title=nj-dogs4dystonia-dog-walk&uid=668c6f6f98953f1092b05b40c2aa5728
26. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=49&Itemid=89&year=2010&month=10&day=02&title=western-regional-symposium&uid=fb7ad822c07989ba1eff5450c196c422
27. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=105&Itemid=89&year=2010&month=10&day=03&title=qmoving-forwardq-4th-annual-st-louis-dystonia-walk-a-thon&uid=30eebe76b967f20d87af2e9c7f46a6a9
28. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=96&Itemid=89&year=2010&month=10&day=03&title=medtronic-twin-cities-marathon&uid=379e1720caadc454d64d3c74ab90f3b1
29. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=107&Itemid=89&year=2010&month=10&day=04&title=dc-golf-and-tennis-classic&uid=84485cff044bd9977b0fc837a73114d0
30. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=103&Itemid=89&year=2010&month=10&day=09&title=alabama-dystance4dystonia-run&uid=870818d71aa02e48c4b5a91951829781
31. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=17&Itemid=89&year=2010&month=10&day=10&title=bank-of-america-chicago-marathon&uid=6ad1bf8969853341e2829586401ab13e
32. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=53&Itemid=89&year=2010&month=10&day=16&title=baltimorejohns-hopkins-support-group-meeting&uid=290d972c71314b4349d53fb5199f4f1b
33. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=104&Itemid=89&year=2010&month=10&day=16&title=pa-dogs4dystonia-walk-a-thon-kingston-pa&uid=99e167b0db48b840f1dc1197c772aec5
34. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=106&Itemid=89&year=2010&month=10&day=24&title=6th-annual-basket-bash&uid=4d6937907ed85f8ad771bd7da4c7af93
35. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=34&Itemid=89&year=2010&month=10&day=28&title=annual-new-jersey-tricky-tray&uid=a3ad21371ae59c55ecf0fcac8b64d758
36. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=82&Itemid=89&year=2010&month=10&day=30&title=tulsa-run&uid=51b4314392afb292ad1aad23de6f3b7a
37. mailto:enewsletter@dystonia-foundation.org?subject=I%27d%20like%20more%20information%20on%20events

Tell us how we are doing. We would love to hear your thoughts about the
newsletter. Email us today at

[1]enewsletter@dystonia-foundation.org

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

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

Would you like to access the newsletter 24/7?

[4]dmrfenews.blogspot.com

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
[9]enewsletter@dystonia-foundation.org
[10]www.dystonia-foundation.org
© 2010 DMRF

DMRF eNews - July 2010

DMRF eNews
July 2010 - to ensure delivery, please add
[11]enewsletter@dystonia-foundation.org to your address book.

New Programs - Great ways to raise much needed funds for science!

The Foundation launched two new fundraising programs, Dogs4Dystonia and
Dystance4Dystonia. Join us as we come together in communities across the
country to raise awareness and much needed funds to support our quest for a
cure.

Dogs4Dystonia is a dog walk for everyone, whether you are a dog owner, a dog
lover, or someone who just wants to do something to support the work of the
DMRF in the dystonia community. Look for two upcoming walks in the Fall in New
Jersey and in Pennsylvania.

Don't see a walk scheduled for your neck of the woods? Contact Lissa at
[12]LSalvatierra@dystonia-foundation.org today to find out how you can host
your own Dogs4Dystonia Dog Walk!
____________________________________________________________

Are you ready to join the DMRF in going the Dystance4Dystonia? This is a great
program and another way to raise dystonia awareness and funding.

Those who take part in the Dystance4Dystonia program can participate in
marathons, 10K, 8K, and 5K runs and walks in several communities across the
country. Did you want to host your own Dystance4Dystonia event? Contact Lissa
at [13]LSalvatierra@dystonia-foundation.org, who can help you plan one for your
community.

Both programs offer family, friends, neighbors and colleagues the opportunity
to show their support for the dystonia community while helping to raise much
needed funds for our programming.

A Big THANK YOU!

Congratulations and thank you to our volunteers who have hosted a dog walk or
participated in area runs!

Omaha, NE Dog Walk

Reston, VA Dog Walk

Eugene, OR Marathon

Show your support!

Come out and cheer for members of the Dystance4Dystonia team during their
upcoming runs:

[14]Kara Wilke at the [15]RNR Chicago 1/2 Marathon

[16]Jessica & [17]Aaron Meyer at the [18]Madison Mini-Marathon

[19]Meredith Fain at the [20]RNR Philadelphia 1/2 Marathon

[21]Jen Cannon at the [22]Twin Cities Marathon

[23]Jennifer Molski at the [24]Bank of America Chicago Marathon

Events on the Move

Come out and join us for some of our upcoming events. You're sure to have a
good time in support of a great cause.

2nd Annual MN Dystonia Golf Classic - Join MN Coordinator, Wayne Erickson on
August 16th, during a fun day of golf, dinner and a concert. [25]Click here to
learn more and register!

5th Annual "Dogs for Dystonia... a dog walk and so much more" - Join Central
Jersey Dystonia Support and Action Group on Sunday, September 26th. Activities
include a dog walk, dog adoptions, dog and child photographs, games, contests,
vendors and prizes. Want to register? [26]Click here.

Moving Forward- 4th Annual St. Louis Dystonia Walk-A-Thon - Grab your sneakers
and your friends and join us on Sunday, October 3rd. 5K and 3K routes
available. If you would like to register for Moving Forward, [27]click here.

Dystonia Golf & Tennis Classic and Banquet - Mark your calendars to come out
and join Board member Donna Driscoll to enjoy a day of golf and tennis on
Monday, October 4th. More information coming soon!

Alabama Dystance4Dystonia Run -The Dothan Satellite Support Group of DSGA has
set Saturday, October 9th as the date for the 1st Alabama Dystance4Dystonia
Run. Runners and walkers are welcome for this 5K run or 1 mile fun run/walk.
Come out and help to make this inaugural event a great success! For more
information, email Lissa at [28]LSalvatierra@dystonia-foundation.org.

Dogs4Dystonia Dog Walk- Kingston, PA - Bring your family and your human and
four-legged friends for a fun event to Kirby Park on Saturday, October 16th.
Enjoy the walk, the great company and the knowledge that you are supporting a
great cause. [29]Register today and get those leashes ready!

New Jersey Tricky Tray - Join volunteer and past President Claire Centrella at
the Annual New Jersey Tricky Tray on Thursday, October 28th. Try your luck on
hundreds of prize baskets and join us for a sit down dinner.

* * * * * *

Thank you to our volunteers who have hosted other fun and unique events in
support of the DMRF!

Calvert Nathans Yard Sale

To learn more about how you can bring a Dogs4Dystonia Dog Walk to your
community or how you can go the Dystance4Dystonia, email Lissa at
[30]LSalvatierra@dystonia-foundation.org.

Upcoming Events
[31]

7/07/10 [32]Mount Sinai SG Meeting
7/10/10 [33]New Mexico SG Meeting
[34]Quad-Cities SG Meeting
7/17/10 [35]Baltimore/John Hopkins SG Meeting
[36]San Diego County SG Meeting
8/01/10 [37]RNR Chicago 1/2 Marathon
8/14/10 [38]North Bay California SG Meeting
8/16/10 [39]2nd Annual Minnesota Dystonia Golf Classic
8/21/10 [40]Madison Mini-Marathon
8/28/10 [41]Fairfield, California SG Meeting
9/11/10 [42]New Mexico Dystonia SG Meeting
9/19/10 [43]RNR Philadelphia 1/2 Marathon
9/25/10 [44]Southeast PA SG Meeting
9/26/10 [45]NJ Dogs4Dystonia Dog Walk
[46][47]
[48]

For information about these or other events, please email us at
[49]enewsletter@dystonia-foundation.org.

References

1. mailto:enewsletter@dystonia-foundation.org?subject=Feedback%20about%20eNews
2. http://dystance4dystonia.org/joomla/index.php?option=com_content&view=article&id=47&Itemid=55
3. http://dystance4dystonia.org/joomla/index.php?option=com_content&view=article&id=46&Itemid=54
4. http://dmrfenews.blogspot.com/
5. http://www.facebook.com/inbox/?ref=mb#/pages/Dystonia-Medical-Research-Foundation/46820882711
6. http://www.myspace.com/thedmrf
7. http://thedmrf.ning.com/
8. http://twitter.com/dmrf
9. mailto:enewsletter@dystonia-foundation.org?subject=Questions,%20comments%20or%20concerns
10. http://www.dystonia-foundation.org/
11. mailto:enewsletter@dystonia-foundation.org
12. mailto:LSalvatierra@dystonia-foundation.org?subject=Dogs4Dystonia
13. mailto:LSalvatierra@dystonia-foundation.org?subject=Dystance4Dystonia
14. http://www.rsvpbook.com/event.php?428837
15. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=13&Itemid=89&year=2010&month=08&day=01&title=rnr-chicago-12-marathon&uid=b56d94196ade45390331925750e505f6
16. http://www.rsvpbook.com/event.php?483218
17. http://www.rsvpbook.com/event.php?410222
18. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=79&Itemid=89&year=2010&month=08&day=21&title=madison-mini-marathon&uid=8a7e512913a87fa8b3a336988b128708
19. http://www.rsvpbook.com/event.php?466577
20. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=15&Itemid=89&year=2010&month=09&day=19&title=rnr-philadelphia-12-marathon&uid=4becdfa0f9c0515c6bc6a631db72c912
21. http://www.rsvpbook.com/event.php?419510
22. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=96&Itemid=89&year=2010&month=10&day=03&title=medtronic-twin-cities-marathon&uid=379e1720caadc454d64d3c74ab90f3b1
23. http://www.rsvpbook.com/event.php?429343
24. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=17&Itemid=89&year=2010&month=10&day=10&title=bank-of-america-chicago-marathon&uid=6ad1bf8969853341e2829586401ab13e
25. http://www.rsvpbook.com/event.php?401747
26. http://www.dogsfordystonia.com/shop/page/4?shop_param=
27. http://www.rsvpbook.com/event.php?463531
28. mailto:LSalvatierra@dystonia-foundation.org?subject=Alabama%20Dystance4Dystonia%20Run
29. http://www.rsvpbook.com/event.php?449855
30. mailto:LSalvatierra@dystonia-foundation.org?subject=Dogs4Dystonia%20or%20Dystance4Dystonia%20Information
31. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=27&Itemid=89&year=2010&month=05&day=14&title=deep-brain-stimulation-forum-a-dystonia-symposium&uid=8f24db63e8c7c06db597a82258b43c11
32. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=59&Itemid=89&year=2010&month=07&day=07&title=mount-sinai-support-group-meeting&uid=8fc920c0cbef2ecf400de08a1b158f50
33. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=91&Itemid=89&year=2010&month=07&day=10&title=new-mexcio-dystonia-sg-meeting&uid=71b384d187fb426fe96fcae098b0578e
34. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=95&Itemid=89&year=2010&month=07&day=10&title=quad-cities-sg-meeting&uid=99f68a39f919185aee41ebd0c972f1af
35. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=52&Itemid=89&year=2010&month=07&day=17&title=baltimorejohn-hopkins-dystonia-support-group-meeting&uid=79252326e2f512127c522b24a989b9d1
36. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=94&Itemid=89&year=2010&month=07&day=17&title=san-diego-county-sg-meeting&uid=941355ea8444f6a09f3fd35474a179ff
37. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=13&Itemid=89&year=2010&month=08&day=01&title=rnr-chicago-12-marathon&uid=b56d94196ade45390331925750e505f6
38. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=61&Itemid=89&year=2010&month=08&day=14&title=north-bay-ca-support-group-meeting&uid=8304527f4eb40c265f056d44f8ae5814
39. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=21&Itemid=89&year=2010&month=08&day=16&title=2nd-annual-minnesota-dystonia-golf-classic&uid=ae832f5d9b92889ddcddd75e7350e8db
40. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=79&Itemid=89&year=2010&month=08&day=21&title=madison-mini-marathon&uid=8a7e512913a87fa8b3a336988b128708
41. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=57&Itemid=89&year=2010&month=08&day=28&title=fairfield-ca-support-group-meeting&uid=c762c5b4dbb954e16ceb405a464c06bc
42. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=92&Itemid=89&year=2010&month=09&day=11&title=new-mexcio-dystonia-sg-meeting&uid=1dc93a986f03dd52178226e9ef01c8b3
43. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=15&Itemid=89&year=2010&month=09&day=19&title=rnr-philadelphia-12-marathon&uid=4becdfa0f9c0515c6bc6a631db72c912
44. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalevent.detail&evid=57&Itemid=89&year=2010&month=09&day=25
45. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalevent.detail&evid=31&Itemid=89&year=2010&month=09&day=26
46. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=75&Itemid=89&year=2010&month=06&day=08&title=dystonia-twitter-awareness-day&uid=fd6b30b7d21a4758d9516080fbcfb931
47. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=84&Itemid=89&year=2010&month=06&day=12&title=greater-dallas-dystoniadysphonia-sg-meeting&uid=15680f6fb82764c73a8fbc9424072e59
48. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=86&Itemid=89&year=2010&month=06&day=12&title=central-virginia-dysphonia-dystonia-sg-meeting&uid=678a6bbdfa2256a39aa1d83c4689d9d6
49. mailto:enewsletter@dystonia-foundation.org?subject=I%27d%20like%20more%20information%20on%20events

Tell us how we are doing. We would love to hear your thoughts about the
newsletter. Email us today at

[1]enewsletter@dystonia-foundation.org

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

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

Would you like to access the newsletter 24/7?

[4]dmrfenews.blogspot.com

Would you like to receive updates by text message?

Text DYSTONIA to 90999.

Join us on one of our social networks:

[5]

[6]

[7]

[8]

Contact Information

One East Wacker Drive, Suite 2810
Chicago, Illinois 60601
800.377.3978
[9]enewsletter@dystonia-foundation.org
[10]www.dystonia-foundation.org
© 2010 DMRF

DMRF eNews - June 2010

DMRF eNews
June 2010 - to ensure delivery, please add
[11]enewsletter@dystonia-foundation.org to your address book.

Dystonia Awareness Week

June 6-12, 2010 is Dystonia Awareness Week. During this time, the DMRF
encourages members of the community to help educate the public about the
disorder. Consider some of the following ways to help raise awareness:
* Talk with one person a day about what dystonia is and how it impacts your
life
* Share information about dystonia with others by passing out trifold cards
(for information on how to get your trifold cards, email
[12]dystonia@dystonia-foundation.org)
* Participate in Dystonia Twitter Awareness Day on June 8th

Want to learn more about how dystonia impacts the lives of others? Stay tuned
for email profiles on individuals affected with dystonia presented throughout
awareness week. Forward them to your friends and family members.

Every effort makes a difference! Spread the word and raise awareness by sharing
with others information about dystonia.

Calling all Twitter Users - Dystonia Awareness Twitter Day

As part of Dystonia Awareness Week, Tuesday June 8th is Dystonia Twitter
Awareness Day, a time where Twitter users unite and talk about the impact of
dystonia on their lives. It's a great time to learn more about the disorder,
ask questions and get to know others who are affected.

The goal is for as many people as possible to tweet about dystonia and create a
trending topic. Last year's event generated a lot of interest and participation
online and we hope to build upon that success.

Get started now - sign up for a Twitter account at [13]htt://twitter.com.

Need more information on how to get started? [14]Click here for more
information.

Already have a Twitter account? Follow us at
[15]@dmrf today!

Looking for content to tweet about? Consider retweeting (or reposting) @dmrf.

DMRF Members Increasing Awareness and Making a Difference!

On Friday June 11, look for DMRF member Jason Dunn on a special episode of
"Extraordinary Humans: Muscles" on the National Geographic Channel. The episode
was partially filmed at the DMRF's 2009 John H. Menkes Children and Family
Symposium. Check local listings for air times. For a preview of the episode,
[16]click here.

What did you think about the episode? Tweet about it. Join @dmrf online on
Twitter and share your comments, thoughts and feelings.

Changing Keys, a film about guitarist and DMRF Awareness Ambassador Billy
McLaughlin, is scheduled to be broadcast on public television during the next
several months. Check your local listings to see if the film will be aired in
your area!

To identify your local public television affiliate, visit: http://www.pbs.org/.
If you do not see Changing Keys listed on the programming schedule, contact the
affiliate and make a request!

Watch for eNews alerts - we will share information about upcoming show times.

Upcoming Events
[17]

6/05/10 [18]Central Jersey SG Meeting
[19]Colorado SG Meeting
[20]Alley Run (Longview, TX)
6/06/10 [21]Dystonia Awareness Week Begins
[22]RNR San Diego Marathon & 1/2 Marathon
6/07/10 [23]Adult Dystonia SG Meeting (NY)
6/08/10 [24]Dystonia Twitter Awareness Day
6/12/10 [25]Greater Dallas Dystonia/Dysphonia SG Meeting
[26]Central Virginia Dysphonia/Dystonia SG Meeting
[27]Sherman Area SG Meeting
6/17/10 [28]New Jersey Dystonia Golf Invitational
6/19/10 [29]Southeast PA SG Meeting
6/29/10 [30]Central Oregon SG Meeting
7/07/10 [31]Mount Sinai SG Meeting
7/10/10 [32]New Mexico SG Meeting
7/17/10 [33]Baltimore/John Hopkins SG Meeting
8/01/10 [34]RNR Chicago 1/2 Marathon
8/14/10 [35]North Bay California SG Meeting
8/16/10 [36]2nd Annual Minnesota Dystonia Golf Classic
8/21/10 [37]Madison Mini-Marathon
8/28/10 [38]Fairfield, California SG Meeting
[39]

For information about these or other events, please email us at
[40]enewsletter@dystonia-foundation.org.

References

1. mailto:enewsletter@dystonia-foundation.org?subject=Feedback%20about%20eNews
2. http://dystance4dystonia.org/joomla/index.php?option=com_content&view=article&id=47&Itemid=55
3. http://dystance4dystonia.org/joomla/index.php?option=com_content&view=article&id=46&Itemid=54
4. http://dmrfenews.blogspot.com/
5. http://www.facebook.com/inbox/?ref=mb#/pages/Dystonia-Medical-Research-Foundation/46820882711
6. http://www.myspace.com/thedmrf
7. http://thedmrf.ning.com/
8. http://twitter.com/dmrf
9. mailto:enewsletter@dystonia-foundation.org?subject=Questions,%20comments%20or%20concerns
10. http://www.dystonia-foundation.org/
11. mailto:enewsletter@dystonia-foundation.org
12. mailto:dystonia@dystonia-foundation.org?subject=I%27d%20like%20to%20order%20trifold%20cards
13. http://twitter.com/
14. http://www.dystonia-foundation.org/pages/create_a_trend/338.php
15. http://twitter.com/dmrf
16. http://channel.nationalgeographic.com/episode/muscles-4923/Overview#tab-Videos/08201_00
17. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=27&Itemid=89&year=2010&month=05&day=14&title=deep-brain-stimulation-forum-a-dystonia-symposium&uid=8f24db63e8c7c06db597a82258b43c11
18. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=54&Itemid=89&year=2010&month=06&day=05&title=central-jersey-support-group-meeting&uid=3564426ec62cb9114e6540d31ad43492
19. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=88&Itemid=89&year=2010&month=06&day=05&title=dystonia-sg-of-colorado-meeting&uid=993d6d5a18bf4db53804a0a27335e981
20. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=78&Itemid=89&year=2010&month=06&day=05&title=alley-run&uid=45aa34315b242ebc7f8fef30e4229236
21. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=74&Itemid=89&year=2010&month=06&day=06&title=dystonia-awareness-week&uid=f047d81510cec092d70463189eab9041
22. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=85&Itemid=89&year=2010&month=06&day=06&title=rnr-san-diego-marathon-a-12-marathon&uid=98977199a5ce7cffc3eeb22ccc2011e9
23. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=68&Itemid=89&year=2010&month=06&day=07&title=adult-dystonia-sg-meeting&uid=2868abc2ddbbe18fdd1255e615bd3926
24. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=75&Itemid=89&year=2010&month=06&day=08&title=dystonia-twitter-awareness-day&uid=fd6b30b7d21a4758d9516080fbcfb931
25. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=84&Itemid=89&year=2010&month=06&day=12&title=greater-dallas-dystoniadysphonia-sg-meeting&uid=15680f6fb82764c73a8fbc9424072e59
26. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=86&Itemid=89&year=2010&month=06&day=12&title=central-virginia-dysphonia-dystonia-sg-meeting&uid=678a6bbdfa2256a39aa1d83c4689d9d6
27. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=89&Itemid=89&year=2010&month=06&day=12&title=the-sherman-area-dystonia-sg-meeting&uid=0687f70f231b3b2da3eea046bda02bfd
28. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=40&Itemid=89&year=2010&month=06&day=17&title=new-jersey-dystonia-golf-invitational&uid=1bf0fbc16aca53d2812d78ed5ab97962
29. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=63&Itemid=89&year=2010&month=06&day=19&title=southeast-pa-support-group-meeting&uid=89163b5675b96d7db2422e737a90c597
30. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=90&Itemid=89&year=2010&month=06&day=29&title=dystonia-sg-of-central-oregon-meeting&uid=48e845ca7447fc3cb77a5c4745caa7d2
31. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=59&Itemid=89&year=2010&month=07&day=07&title=mount-sinai-support-group-meeting&uid=8fc920c0cbef2ecf400de08a1b158f50
32. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=91&Itemid=89&year=2010&month=07&day=10&title=new-mexcio-dystonia-sg-meeting&uid=71b384d187fb426fe96fcae098b0578e
33. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=52&Itemid=89&year=2010&month=07&day=17&title=baltimorejohn-hopkins-dystonia-support-group-meeting&uid=79252326e2f512127c522b24a989b9d1
34. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=13&Itemid=89&year=2010&month=08&day=01&title=rnr-chicago-12-marathon&uid=b56d94196ade45390331925750e505f6
35. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=61&Itemid=89&year=2010&month=08&day=14&title=north-bay-ca-support-group-meeting&uid=8304527f4eb40c265f056d44f8ae5814
36. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=21&Itemid=89&year=2010&month=08&day=16&title=2nd-annual-minnesota-dystonia-golf-classic&uid=ae832f5d9b92889ddcddd75e7350e8db
37. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=79&Itemid=89&year=2010&month=08&day=21&title=madison-mini-marathon&uid=8a7e512913a87fa8b3a336988b128708
38. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=57&Itemid=89&year=2010&month=08&day=28&title=fairfield-ca-support-group-meeting&uid=c762c5b4dbb954e16ceb405a464c06bc
39. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=3&Itemid=89&year=2010&month=04&day=24&title=calvertnathans-family-yard-sale-nj&uid=56df1b1f345151c8062576c91bdd6daa
40. mailto:enewsletter@dystonia-foundation.org?subject=I%27d%20like%20more%20information%20on%20events

Tell us how we are doing. We would love to hear your thoughts about the
newsletter. Email us today at

[1]enewsletter@dystonia-foundation.org

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

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

Would you like to access the newsletter 24/7?

[4]dmrfenews.blogspot.com

Would you like to receive updates by text message?

Text DYSTONIA to 90999.

Join us on one of our social networks:

[5]

[6]

[7]

[8]

Contact Information

One East Wacker Drive, Suite 2810
Chicago, Illinois 60601
800.377.3978
[9]enewsletter@dystonia-foundation.org
[10]www.dystonia-foundation.org
© 2010 DMRF

In Memoriam - Shari Farber Tritt

It is with profound sadness that we announce the death of a member of the DMRF family, Shari Farber Tritt. Shari and her husband Ira touched the hearts of millions through the dystonia documentary film, TWISTED several years ago. For those of us who knew her, Shari was an inspiration every day. Although dystonia took much from her, she never let it defeat her. Shari had a love of life, an infectious laughter, a devotion to her family and the courage she demonstrated was a source of strength for so many in our community. Shari died on Saturday after a tragic accident in their swimming pool. She will be missed by many. Our sympathies go out to Ira, her parents, Harriett and Joel, and her sister Beth.

DMRF eNews - May 2010

DMRF eNews
May 2010 - to ensure delivery, please add
[11]enewsletter@dystonia-foundation.org to your address book.

Without a sense of caring, there can be no sense of community.

- Anthony D'Angelo

Patient Support

Supporting people affected by dystonia and their families is a major priority
for the Dystonia Medical Research Foundation- patient support has been a part
of the Foundation’s mission since our founding over 30 years ago. Coping with
dystonia can be life changing. The process of obtaining a diagnosis can be
frightening, especially when the individual is experiencing a loss of mobility
and possibly independence. It can be very stressful and isolating.
Peer support can help those affected by dystonia recover and thrive. By
sharing knowledge and feelings, dystonia patients can learn from each other and
take comfort in knowing that they are not facing an uncertain future alone.
DMRF support groups can help alleviate feelings of depression and promote a
healthy attitude and better physical outcomes. Research has long demonstrated
the importance of support groups in helping to improve the lives of those
living with disorders like dystonia. Establishing a network of peers who are
working together to share coping strategies, lend a friendly ear during those
particularly challenging days, and who share a desire to stay abreast of
dystonia treatment and research news is so important.

The value of Support Groups

The key function of a DMRF support group is support and education. DMRF
support groups empower patients, family members, and friends with information
and offer a venue for discussing and validating their changing needs and
feelings. Support groups provide members the opportunity to be and stay
connected with others who can truly empathize with how dystonia changes lives.
DMRF support groups are also a place for others to give back – to help those
who are newly diagnosed or those who are having a particularly challenging
time. DMRF support group members care about one another and as such create an
important community.

Recent advances in technology and the growth of social networks have created
more virtual outreach to others who are affected by dystonia and this is to be
celebrated. However, there is no substitute for that person-to-person, human
contact and the DMRF is committed to helping provide access to this for those
who want more, -- those who want that personal touch that support groups
provide. For more information on DMRF support groups, please contact Julie Mack
at the Foundation: [12]jmack@dystonia-foundation.org

Educational-Support Opportunities
May 14 – 15, 2010
Don't miss the opportunity to connect with others in the dystonia community!
Learn more about DBS and dystonia by attending the symposium set to take place
at the Marriott Fisherman’s Wharf in San Francisco, CA. This is a wonderful
opportunity to meet others affected by dystonia.

October 2, 2010
Mark Your Calendars Now for the DMRF Western Regional Conference at the Hilton
Pasadena, Pasadena, CA

Upcoming Events
[13]
5/08/10 [14]Northern Colorado Dystonia SG Meeting
5/14/10 [15]DBS Forum & Dystonia Symposium-San Francisco(CA)[16]
5/15/10 [17]Dogs4Dystonia- Reston (VA)
5/15/10 [18]San Diego County SG Meeting
5/15/10 [19]North Bay California SG Meeting
5/18/10 [20]Central Oregon SG Meeting
5/22/10 [21]Fairfield, CA SG Meeting
5/23/10 [22]Los Angeles, CA SG Meeting
6/08/10 [23]Dystonia Twitter Awareness Day
6/05/10 [24]Central Jersey SG Meeting
6/06/10 [25]Dystonia Awareness Week
6/07/10 [26]Adult Dystonia SG Meeting
6/17/10 [27]New Jersey Dystonia Golf Invitational
6/19/10 [28]Southeast PA SG Meeting
7/07/10 [29]Mount Sinai SG Meeting
7/17/10 [30]Baltimore/John Hopkins SG Meeting
[31]

Congratulations!

The following events recently took place and were a great success! Thank you to
everyone for making a difference.

Women Who Weld (NE)
Welcome to Margaritaville (MA)
RNR Nashville, Marathon & 2 (TN)
Calvert/Nathans Family Yard Sale (NJ)
Dystonia Bowl-A-Thon (NJ)
Dogs4Dystonia-Omaha (NE)
Flying Pig Marathon (OH)
Eugene Marathon (OR)
Advocacy Day (DC)

For information about these or other events, please email us at
[32]enewsletter@dystonia-foundation.org.

References

1. mailto:enewsletter@dystonia-foundation.org?subject=Feedback%20about%20eNews
2. http://dystance4dystonia.org/joomla/index.php?option=com_content&view=article&id=47&Itemid=55
3. http://dystance4dystonia.org/joomla/index.php?option=com_content&view=article&id=46&Itemid=54
4. http://dmrfenews.blogspot.com/
5. http://www.facebook.com/inbox/?ref=mb#/pages/Dystonia-Medical-Research-Foundation/46820882711
6. http://www.myspace.com/thedmrf
7. http://thedmrf.ning.com/
8. http://twitter.com/dmrf
9. mailto:enewsletter@dystonia-foundation.org?subject=Questions,%20comments%20or%20concerns
10. http://www.dystonia-foundation.org/
11. mailto:enewsletter@dystonia-foundation.org
12. mailto:jmack@dystonia-foundation.org?subject=Julie%20Mack
13. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=26&Itemid=89&year=2010&month=05&day=01&title=dystonia-bowl-a-thon-ny&uid=1902a1d2c66d12622c6ef4eea3b16f3c
14. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=71&Itemid=89&year=2010&month=05&day=08&title=northern-colorado-dystonia-sg-meeting&uid=db5fc491834a83e34a0af3f4664c47c5
15. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=27&Itemid=89&year=2010&month=05&day=14&title=deep-brain-stimulation-forum-a-dystonia-symposium&uid=8f24db63e8c7c06db597a82258b43c11
16. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=27&Itemid=89&year=2010&month=05&day=14&title=deep-brain-stimulation-forum-a-dystonia-symposium&uid=8f24db63e8c7c06db597a82258b43c11
17. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=28&Itemid=89&year=2010&month=05&day=15&title=dogs4dystonia-dog-walk-reston-va&uid=216fdf93ceb26b7ba867b0a06ee59439
18. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=45&Itemid=89&year=2010&month=05&day=15&title=san-diego-county-sg-meeting&uid=03c18678bb950eb407e1c1f72cd59284
19. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=60&Itemid=89&year=2010&month=05&day=15&title=north-bay-ca-support-group-meeting&uid=d76812478e764bc5b4b1abb8caa39e8f
20. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=55&Itemid=89&year=2010&month=05&day=18&title=central-or-support-group-meeting&uid=2f5941406604a177c1a14f237b3543b4
21. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=56&Itemid=89&year=2010&month=05&day=22&title=fairfield-ca-support-group-meeting&uid=a8998ab2a422f9ec0765c120756c1fe7
22. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=39&Itemid=89&year=2010&month=05&day=23&title=los-angeles-dystonia-sg-quarterly-meeting&uid=1fec9802335e68baa442fa0366c8bd68
23. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=72&Itemid=89&year=2010&month=06&day=01&title=dystonia-twitter-awareness-day&uid=fd6b30b7d21a4758d9516080fbcfb931
24. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=54&Itemid=89&year=2010&month=06&day=05&title=central-jersey-support-group-meeting&uid=3564426ec62cb9114e6540d31ad43492
25. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=75&Itemid=89&year=2010&month=06&day=08&title=dystonia-twitter-awareness-day&uid=fd6b30b7d21a4758d9516080fbcfb931
26. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=68&Itemid=89&year=2010&month=06&day=07&title=adult-dystonia-sg-meeting&uid=2868abc2ddbbe18fdd1255e615bd3926
27. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=40&Itemid=89&year=2010&month=06&day=17&title=new-jersey-dystonia-golf-invitational&uid=1bf0fbc16aca53d2812d78ed5ab97962
28. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=63&Itemid=89&year=2010&month=06&day=19&title=southeast-pa-support-group-meeting&uid=89163b5675b96d7db2422e737a90c597
29. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=59&Itemid=89&year=2010&month=07&day=07&title=mount-sinai-support-group-meeting&uid=8fc920c0cbef2ecf400de08a1b158f50
30. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=52&Itemid=89&year=2010&month=07&day=17&title=baltimorejohn-hopkins-dystonia-support-group-meeting&uid=79252326e2f512127c522b24a989b9d1
31. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=3&Itemid=89&year=2010&month=04&day=24&title=calvertnathans-family-yard-sale-nj&uid=56df1b1f345151c8062576c91bdd6daa
32. mailto:enewsletter@dystonia-foundation.org?subject=I%27d%20like%20more%20information%20on%20events

Tell us how we are doing. We would love to hear your thoughts about the
newsletter. Email us today at

[1]enewsletter@dystonia-foundation.org

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

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

Would you like to access the newsletter 24/7?

[4]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".

Contact Information

One East Wacker Drive, Suite 2810
Chicago, Illinois 60601
800.377.3978
[9]enewsletter@dystonia-foundation.org
[10]www.dystonia-foundation.org
© 2010 DMRF

DMRF eNews - April 2010

DMRF eNews
April 2010 - to ensure delivery, please add
[11]enewsletter@dystonia-foundation.org to your address book.

New Research Funding Announced

DMRF's Medical and Scientific Advisory Council (MSAC) recently met to review
grant and fellowship applications. The MSAC is compromised of clinicians and
researchers from a diversity of scientific fields charged with helping us
determine the most scientifically sound and relevant studies to fund. Projects
selected for funding this year aim to help us learn more about how torsinA
functions in cells, discover new genes responsible for cervical dystonia, and
potentially identify new therapeutic targets. To see a complete list of
projects approved for funding this year [12]click here.

Upcoming Meetings

As part of our ongoing effort to increase awareness about dystonia, the DMRF
exhibits at a few neurological meetings each year. At these meetings, we hand
out information about dystonia to neurologists, and also promote our research
funding opportunities. These meetings provide a wonderful opportunity to
interact with and educate people about dystonia and keep people who do know
about dystonia informed about what is going on in the dystonia community. Here
are a few meetings that we will be attending and exhibiting at in the near
future:

American Academy of Neurology (AAN) Annual Meeting

The annual meeting of the AAN is being held April 10-17 in Toronto, Ontario.
The AAN is an international professional association of more than 22,000
neurologists and neuroscience professionals dedicated to promoting the highest
quality patient-centered neurologic care. Representatives from DMRF will be in
attendance to sit in on scientific and poster sessions on dystonia and will be
distributing information to meeting attendees in the exhibit hall. In a
combined effort with other dystonia patient groups who will be present at this
meeting, we will also be distributing information about the Dystonia Coalition
and its research funding opportunities.

We are pleased to announce that at his year's meeting the AAN will be
presenting acclaimed musician Billy McLaughlin, who has focal dystonia, with
their Public Leadership in Neurology Award. Billy, who was appointed as DMRF's
Awareness Ambassador in 2008, has worked tirelessly to increase awareness of
dystonia. Congratulations, Billy!

First International Congress on Treatment of Dystonia

The First International Congress on Treatment of Dystonia will be held May 6-8
in Hannover, Germany. This meeting will feature plenary sessions, lectures,
poster presentations and teaching courses all focused on current treatments for
dystonia. The goal of this meeting is to identify unmet therapeutic needs, in
the hopes of fostering collaboration to improve currently available treatments,
as well as stimulating research for new therapeutic approaches. Hundreds of
participants from all over the world are expected to attend.

Dystonia Advocacy Day

The return of spring is a perennial reminder that Dystonia Advocacy Day will
soon be here. Our 2010 Advocacy Day is scheduled for Tuesday, May 4th and
Wednesday, May 5th at the Saint Gregory Hotel in Washington, DC. With over 100
dystonia advocates from across the country already registered, this year's
event looks like it may be our most successful yet.

If you would like to participate in Dystonia Advocacy Day and meet with the
offices of your Members of Congress to advocate for the legislative needs of
the dystonia community, please email Dane Christiansen, the DMRF's Grassroots
Coordinator, at [13]dchristiansen@dystonia-foundation.org for additional
information.

Other Upcoming Events
4/23/10 [14]Margaritaville (MA)
4/24/10 [15]Rock N Roll Nashville Marathon & 1/2 (TN)
4/24/10-
4/25/10- [16]Calvert/Nathans Family Yard Sale (NJ)
5/01/10 [17]Dystonia Bowl-A-Thon (NY)
5/02/10 [18]Dogs4Dystonia (NE)
5/02/10 [19]Flying Pig Marathon (OH)
5/02/10 [20] [21]Eugene Marathon (OR)
5/08/10 [22]5/3 River Bank Run (MI)
5/15/10 [23] [24]Dogs4Dystonia (VA)
5/14/10-
5/15/10 [25]DBS[26] Forum & Dystonia Symposium-San Francisco(CA)
6/01/10 Dystonia Twitter Awareness Day
6/06/10 [27]RNR San Diego Marathon (CA)

For information about these or other events, please
[28]enewsletter@dystonia-foundation.org.

References

1. mailto:enewsletter@dystonia-foundation.org?subject=Feedback%20about%20eNews
2. http://dystance4dystonia.org/joomla/index.php?option=com_content&view=article&id=47&Itemid=55
3. http://dystance4dystonia.org/joomla/index.php?option=com_content&view=article&id=46&Itemid=54
4. http://dmrfenews.blogspot.com/
5. http://www.facebook.com/inbox/?ref=mb#/pages/Dystonia-Medical-Research-Foundation/46820882711
6. http://www.myspace.com/thedmrf
7. http://thedmrf.ning.com/
8. http://twitter.com/dmrf
9. mailto:enewsletter@dystonia-foundation.org?subject=Questions,%20comments%20or%20concerns
10. http://www.dystonia-foundation.org/
11. mailto:enewsletter@dystonia-foundation.org
12. http://www.dystonia-foundation.org/pages/research_in_2010/148.php
13. mailto:dchristiansen@dystonia-foundation.org?subject=I%20want%20to%20become%20a%20dystonia%20advocate%21
14. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=2&Itemid=89&year=2010&month=04&day=23&title=margaritaville-dance-for-dystonia-ma&uid=abe61d01c00638419d919592835a39af
15. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=6&Itemid=89&year=2010&month=04&day=24&title=rock-n-roll-country-music-nashville-marathon-and-12&uid=4218801c397b622731903e2190719c8b
16. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=3&Itemid=89&year=2010&month=04&day=24&title=calvertnathans-family-yard-sale-nj&uid=56df1b1f345151c8062576c91bdd6daa
17. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=26&Itemid=89&year=2010&month=05&day=01&title=dystonia-bowl-a-thon-ny&uid=1902a1d2c66d12622c6ef4eea3b16f3c
18. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=22&Itemid=89&year=2010&month=05&day=02&title=dogs4dystonia-dog-walk-omaha-ne&uid=dfab701d7ae7a8c0218ad6bf93b6198e
19. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=8&Itemid=89&year=2010&month=05&day=02&title=flying-pig-marathon&uid=495ac4ebf4c7199b3466297b6c5aa23d
20. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=9&Itemid=89&year=2010&month=05&day=02&title=eugene-marathon&uid=b4dae39293fdeb23805409ccb0ffaab2
21. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=9&Itemid=89&year=2010&month=05&day=02&title=eugene-marathon&uid=b4dae39293fdeb23805409ccb0ffaab2
22. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=10&Itemid=89&year=2010&month=05&day=08&title=53-river-bank-run&uid=e555d4f462fa99e24ea8b2411db47b94
23. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=28&Itemid=89&year=2010&month=05&day=15&title=dogs4dystonia-dog-walk-reston-va&uid=216fdf93ceb26b7ba867b0a06ee59439
24. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=28&Itemid=89&year=2010&month=05&day=15&title=dogs4dystonia-dog-walk-reston-va&uid=216fdf93ceb26b7ba867b0a06ee59439
25. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=27&Itemid=89&year=2010&month=05&day=14&title=deep-brain-stimulation-forum-a-dystonia-symposium&uid=8f24db63e8c7c06db597a82258b43c11
26. http://www.dystonia-foundation.org/pages/view_event/225.php?id=168
27. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=11&Itemid=89&year=2010&month=06&day=06&title=rock-n-roll-san-diego-marathon-and-12&uid=9217600d6cf9a88303d85a0790f71d0e
28. mailto:enewsletter@dystonia-foundation.org?subject=I%27d%20like%20more%20information%20on%20events

Tell us how we are doing. We would love to hear your thoughts about the
newsletter. Email us today at

[1]enewsletter@dystonia-foundation.org

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

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

Would you like to access the newsletter 24/7?

[4]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".


Contact Information

One East Wacker Drive, Suite 2810
Chicago, Illinois 60601
800.377.3978
[9]enewsletter@dystonia-foundation.org
[10]www.dystonia-foundation.org
© 2010 DMRF

DMRF eNews - March 2010

DMRF eNews

March 2010 - to ensure delivery, please add
[mailto:enewsletter@dystonia-foundation.org]
enewsletter@dystonia-foundation.org to your address book.

These days, deadlock in Congress seems to be dominating the political
headlines. However, there is one issue area where Members of Congress have
been able to reach across the aisle, find common ground, and work together
to create meaningful progress—bolstering dystonia research.

Dystonia Advocates Secure DOD Research Opportunities

DMRF Advocates from left to right: Janice Nachbar, Joanna Manusov, and Len
Nachbar.

In December of 2009, just before adjourning for the year, Congress passed
the fiscal year (FY) 2010 Defense Appropriations Bill. This annual
legislation funds the Department of Defense (DOD), its Congressionally
Directed Medical Research Program (CDMRP), and lists the conditions
“eligible for study” through the CDMRP. Thanks to the tireless outreach
to Members of Congress by dystonia advocates, for FY 2010 this exclusive
list includes dystonia as one of the conditions eligible for study.

Dystonia’s addition to the eligible conditions list means that dystonia
researchers will now be able to submit research proposals and compete for
funding through appropriate CDMRP grants. For more information about the
submission process, please click
[http://www.dystonia-foundation.org/pages/2010_solicitation_for_research_support_from_dod/364.php]
here.

Congress Increases Funding for Medical Research

The National Institutes of Health (NIH) is the nation’s foremost leader
in federally supported medical research, and hosts a robust dystonia
research portfolio. Congress will not direct funding to disease-specific
research at NIH, so each year dystonia advocates call on their legislators
to provide NIH with substantial funding increases to ensure that all
research portfolios benefit from additional resources. For FY 2010, NIH
received a 2.3% funding increase, or roughly $700 million in additional
budget authority. For FY 2011, the Administration and Congress have both
indicated that they are interested in providing NIH with further funding
increases. Dystonia advocates will continue to work with their legislators
in support of the dystonia research portfolio by ensuring that NIH receives
the largest reasonable FY 2011 allocation possible.

2010 Dystonia Advocacy Day

DMRF advocate Joel Farber visits with his Congresswoman, Jan Schakowsky
(D-IL), during the 2009 Dystonia Advocacy Day networking dinner.

The 2010 Dystonia Advocacy Day is scheduled for Tuesday, May 4th and
Wednesday, May 5th at the Saint Gregory Hotel in Washington, DC. This
two-day event brings dystonia affected individuals from across the country
together on Capitol Hill to educate legislators about dystonia and enlist
congressional support behind advancing research and improving patient care.
The May 4th session of the program features a review of our legislative
agenda, comprehensive training for advocates, and a networking dinner. On
May 5th, participants will visit the offices of their Members of Congress
and meet their elected officials or the staff members who handle health
policy issues. If you would like to register for this event or if you would
like additional information, please visit the page found
[http://www.dystonia-foundation.org/pages/advocacy_day_2009/476.php%20]
here.

Dystonia Advocacy Coalition in now the Dystonia Advocacy Network

DMRF, BEBRF, DySTonia, Inc., NSDA, and NSTA have for the past 4 years
worked together to advocate on issues of common concern to the dystonia
community as the Dystonia Advocacy Coalition (DAC). In February of 2010,
the DAC member organizations decided to change the name of this advocacy
group to the Dystonia Advocacy Network (DAN). The name change is intended
to avoid confusion with the dystonia community’s emerging collaborative
clinical research initiative known as the Dystonia Coalition. This change
is in name only; the DAN’s member organizations, legislative priorities,
and activities remain unchanged.

Interested in Advocacy?

The DMRF relies on its grassroots advocates to educate Members of Congress
about dystonia, raise critical awareness, and secure support for crucial
legislative efforts which benefit dystonia patients. If you are interested
in becoming a dystonia advocate, please contact the DMRF’s Grassroots
Coordinator, Dane Christiansen, at
[mailto:dchristiansen@dystonia-foundation.org?subject=I%20want%20to%20become%20a%20dystonia%20advocate%21]
dchristiansen@dystonia-foundation.org. Additional information on DMRF
advocacy and our legislative priorities can be found
[http://www.dystonia-foundation.org/pages/advocacy/12.php] here.

Other Upcoming Events

3/09/10 CPK Dine In (IL)

3/14/10 Rock N Roll Dallas 1/2 Marathon (TX)

4/09/10 Women Who Weld (NE)

4/23/10
[http://www.dystonia-foundation.org/pages/view_event/225.php?id=97]
Margaritaville (MA)

4/24/10 Flea Market (NJ)
4/24/10 Rock N Roll Nashville Marathon & 1/2 (TN)
5/14/10-

5/15/10
[http://www.dystonia-foundation.org/pages/view_event/225.php?id=168]
DBS[http://www.dystonia-foundation.org/pages/view_event/225.php?id=168]
Forum & Dystonia Symposium-San Francisco(CA)

For information about these or other events, please
[mailto:enewsletter@dystonia-foundation.org?subject=I%27d%20like%20more%20information%20on%20events]
enewsletter@dystonia-foundation.org.

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

[mailto:lsalvatierra@dystonia-foundation.org?subject=I%20want%20to%20go%20the%20Dystance4Dystonia]
Go the Dystance4Dystonia and run for those who can't!

[mailto:lsalvatierra@dystonia-foundation.org?subject=I%27d%20like%20to%20host%20a%20Dogs4Dystonia%20Dog%20Walk]
Host a Dogs4Dystonia Dog Walk in your community today!

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
[http://www.dystonia-foundation.org/] www.dystonia-foundation.org
© 2010 DMRF

DMRF eNews - February 2010

DMRF eNews

February 2010 - to ensure delivery, please add
[mailto:enewsletter@dystonia-foundation.org]
enewsletter@dystonia-foundation.org to your address book.

The Dystonia Medical Research Foundation (DMRF) is pleased to announce the
formal launch of two new programs, Dystance4Dystonia and Dogs4Dystonia.
Both programs came as a result of some of our most dedicated members as
they looked at ways to do more to support the dystonia community and the
work of the Foundation.

Dystance4Dystonia

Dystance4Dystonia is one of the exciting new programs of the Dystonia
Medical Research Foundation. Those who take part in the Dystance4Dystonia
program will participate in marathons, 10K, 8K and 5K runs and walks in
several communities across the country in 2010, helping to raise much
needed funds. Support garnered for Dystance4 Dystonia program will benefit
the work of the Dystonia Medical Research Foundation (DMRF).

Dystance4Dystonia came from long-time member Cindy DuVal and the Puget
Sound Dystonia Support Group. Entering into it's 10th year, the walk has
made a tremendous impact on the dystonia community in the Washington area.
Our many thanks to Cindy and members of the support group for all of their
work over the years!

Calling all runners, walkers and volunteers to join Dystance4Dystonia

We are looking for runners (all levels), walkers and people that want to
make a difference in our community to join us as we partake in a number of
fun races across the country, helping to raise much needed funds in the
process. Think you can’t make a full marathon? Don’t worry, we have
full, ½ marathons, 8K, and 5K and we need your help to reach our goal.

All participants will receive an official 2010 event t-shirt,
refreshments and a huge THANK YOU from the Dystonia Medical Research
Foundation and its network. See our list of races below.

If you or someone you know is interested in going the Dystance4Dystonia,
please contact Lissa at
[mailto:lsalvatierra@dystonia-foundation.org?subject=More%20information%20on%20Dystance4Dystonia]
lsalvatierra@dystonia-foundation.org. Please make sure you contact Lissa
if you would like to register to participate in support of the DMRF for any of the races.

2010 Races

Are you ready to run now? We are looking for people to participate in
our March and April races and are waiting to hear from you! Run for those
who can't!

03/14/10 Dallas 1/2 Marathon

03/21/10 Bank of America Shamrock Shuffle 8k

04/24/10 Nashville Marathon and 1/2

05/01/10 Wisconsin Marathon

05/02/10 Flying Pig Marathon

05/02/10 Eugene Marathon

05/08/10 5/3 River Bank Run

06/06/10 San Diego Marathon and 1/2

06/26/10 Seattle Marathon and 1/2

08/01/10 Chicago 1/2 Marathon

09/05/10 Virginia 1/2 Marathon

09/19/10 Philadelphia 1/2 Marathon

10/03/10 San Jose 1/2 Marathon

10/10/10 Bank of America Chicago Marathon

10/24/10 Los Angeles 1/2 Marathon

11/14/10 San Antonio Marathon and 1/2

12/05/10 Las Vegas Marathon

Questions: Contact Lissa, the Manager of Special Events, at
[mailto:lsalvatierra@dystonia-foundation.org?subject=More%20information%20on%20Dystance4Dystonia]
lsalvatierra@dystonia-foundation.org or 312.447.5095 to find out how you
can go the Dystance4Dystonia!

Follow Dystance4Dystonia on Facebook

[http://www.facebook.com/pages/Dystance4Dystonia/296350820945]
http://www.facebook.com/pages/Dystance4Dystonia/296350820945

and on Twitter
[http://twitter.com/dyst4dystonia] http://twitter.com/dyst4dystonia

Dogs4Dystonia

"Dogs are not our whole life, but they make our lives whole."

~ Roger Caras

Dogs are important to many. They are faithful companions and friends,
always there without question. For many with dystonia, dogs offer the
guidance and support needed to help their owners get through the day.

Dogs4Dystonia came from Janice and Len Nachbar and Joanna Manusov,
long-time volunteers in the Central NJ area. The DMRF is grateful to
Janice, Len and Joanna for creating this wonderful program.

Dogs4Dystonia Dog Walks are a great way to bring together family, friends
and the community together for a fun time in support of a good cause.
Whether you are a dog owner, a dog lover, or someone who just wants to do
something for dystonia, the Dogs4Dystonia Dog Walks may just be up your
alley.

Do you have the cutest dog?
Is your dog the best tail wagger out there?
How does your dog rate?

Stay tuned for more information on how to enter your dog into the
Dogs4Dystonia Virtual Dog Walk. Get your cameras ready and start capturing
those attention grabbing shots of your four legged friend!

Would you be interested in bringing a Dogs4Dystonia Dog Walk to your
community? Email Lissa at
[mailto:lsalvatierra@dystonia-foundation.org?subject=Dogs%20for%20Dystonia%20Dog%20Walk]
lsalvatierra@dystonia-foundation.org today!

Follow Dogs4Dystonia on Facebook

[http://www.facebook.com/pages/dogs4dystonia/310473013264]
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and on Twitter

[http://twitter.com/dogs4dystonia] http://twitter.com/dogs4dystonia

Other Upcoming Events

Should you prefer to organize your own event in support of the DMRF, we
are here to help. Call us today at 312.447.5095 to get started!

2/12/10 [http://www.rsvpbook.com/event.php?449115] MN Sleigh Ride, Dinner
and Concert
4/23/10 Margaritaville (MA)

4/24/10 Flea Market (NJ)

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]

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[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
[http://www.dystonia-foundation.org/] www.dystonia-foundation.org
© 2009 DMRF