DMRF eNews - July 2011

DMRF eNews

July 2011

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

Dee Linde's Testimony

Dee Linde, a Dystonia Medical Research Foundation (DMRF) and Benign Essential
Blepharospasm Research Foundation (BEBRF) volunteer and a former Navy petty
officer, provided testimony before the Senate Defense Appropriations
Subcommittee to ask for their support. Dee provided dystonia information to the
Subcommittee members - appealing to them to help us learn more about dystonia
so that we might be able to reduce or even eliminate the suffering of returning
military personnel who might be at risk for developing dystonia because of a
traumatic brain injury.

Many thanks to Dee for sharing her personal story with the Senators present and
to everyone else.

Don't Miss the Children and Family Dystonia Symposium - Register Today!

6th John H. Menkes Children & Family Dystonia Symposium

August 19-21, 2011 at the Holiday Inn Mart Plaza, Chicago, IL.

Individuals and families come together to learn about dystonia diagnosis,
treatment and research, interact with experts, and find support from one
another. There will be special sessions for children ages 6-12, teens,
siblings, parents of affected children, and dystonia-affected adults/parents.

[2]CLICK HERE for more information and to learn how to register.

Volunteers with Cervical Dystonia Needed for Study

Allergan, Inc. is seeking volunteers who are or will be receiving Botox®
(onabotulinumtoxinA) injections for the treatment of cervical dystonia for
potential participation in an observational study. Eligible patients may
receive a patient stipend for their participation.

The CD-PROBE Study is a multi-center registry of cervical dystonia and therapy
with botulinum toxin type A (onabotulinumtoxinA).

For more information and to locate participating physicians in your area please
contact the CD-PROBE Study at [3]cdprobe@mednetstudy.com or 866-258-2737.

DMRF and the Movement Disorder Society

The Dystonia Medical Research Foundation (DMRF) is honored to be featured in
the June/July edition of the Movement Disorder Society website.

Check out the following articles to find out how the DMRF helps patients and
physicians, how we are working to train the next generation of Movement
Disorder Specialist, and to get a sneak peek at the upcoming 5th International
Dysotnia Symposium.

* [4]DMRF Provides Essential Services for Physicians and Patients Resources
Designed to Support Patient Care.
* [5]Training Tomorrow's Movement Disorder Superheroes - DMRF and Merz
Partner to Offer Clinical Movement DIsorders Fellowships with a Focus on
Dysotnia
* [6]5th International Dystonia Symposium - It's Not What You Think!

New DMRF Survey: How Do You Cope?

[7]Click here to participate.

"Faces of Dystonia" Celebrates You!

When a person is diagnosed with dystonia, the whole family is affected. Every
family member experiences dystonia in their own way.

Meet Scott, whose symptoms started in 1992 but was just diagnosed with Cervical
dystonia in 2009. If you would like to read more about Scott visit us at
[8]Faces of Dystonia

Spouses, parents, children, and siblings are all invited to share their stories
as part of "Faces of Dystonia."

Share your story here! [9]http://www.dystonia-foundation.org/faces

Upcoming Support Group Meetings

7/16 - [10]Dystonia Support/Advocacy Group (San Diego, CA)

7/16 - [11]Colorado Dystonia/Blepharospasm Group (Englewood, CO)

7/23 - [12]Quad-City Dystonia Support Group (Eldridge, IA)

8/10 - [13]The Phoenix Arizona Dystonia SG (Phoenix, AZ)

8/13 - [14]North Bay Dystonia SG Meeting (Santa Rosa, CA)

9/27 - [15]University of Miami South Florida Dystonia (N Miami, FL)

Coming Soon...

8/19 - [16]Children & Family Dystonia Symposium (Chicago, IL)

8/19 - [17]3rd Annual MN Dystonia Golf Classic (Cannon Falls, MN)

9/17 -[18] [19]Dewey Beach Sprint Triathlon -Pat Brogan (Dewey Beach, DE)

9/17 - [20]Dogs4Dystonia Dog Walk for Awareness (East Greenwich, RI)

9/24 -[21] 2nd Annual Alabama Dystance4Dystonia Run (Dothan, AL)

For more information on the Dystance4Dystonia program, please email Tammy at
[22]treed@dystonia-foundation.org or

give her a call at 312-447-5098 today.

Tell us how we are doing. We would love to hear your thoughts about the
newsletter. Email us today at[23] enewsletter@dystonia-foundation.org

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

Would you like to receive updates by text message?

Text DYSTONIA to 90999

Join us on one of our social networks:

[25][jpeg] [26][jpeg] [27][jpeg]

[28][jpeg] [29][jpeg]

In This Issue

Testimony

Children & Family Symposium

Volunteers Needed

DMRF featured on MDS website

DMRF Survey

Faces of Dystonia

Upcoming Support Group Mtgs

Coming Soon

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

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

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

* Please see Terms & Conditions below

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

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

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

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

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

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

References

1. mailto:enewsletter@dystonia-foundation.org
2. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=147&Itemid=89&year=2011&month=08&day=19&title=6th-john-h-menkes-children-a-family-dystonia-symposium&uid=8c2ce47afdc141a8f8ae81e238afa412
3. mailto:cdprobe@mednetstudy.com?subject=CD-Probe%20Study
4. http://www.movementdisorders.org/monthly_edition/2011/06/dmrf.php
5. http://www.movementdisorders.org/monthly_edition/2011/06/fellowship.php
6. http://www.movementdisorders.org/monthly_edition/2011/06/symposium.php
7. https://www.surveymonkey.com/s/howdoyoucope
8. http://www.dystonia-foundation.org/pages/faces_of_dystonia/620.php
9. http://www.dystonia-foundation.org/pages/faces/611.php
10. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=231&Itemid=89&year=2011&month=07&day=16&title=dystonia-support-a-advocacy-group-of-san-diego-county&uid=effc493dea0021cb0b353609e99f14e9
11. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=245&Itemid=89&year=2011&month=07&day=16&title=colorado-dystonia-and-blepharospasm-group-meeting&uid=ab6b4d32bf2dc3ee5eee050af603e143
12. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=215&Itemid=89&year=2011&month=07&day=23&title=quad-city-dystonia-support-group&uid=d21c08afb42baa375221956851da6e3c
13. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=232&Itemid=89&year=2011&month=08&day=10&title=the-phoenix-arizona-dystonia-support-group&uid=a27f75d826969e65d8ba67f475b111b7
14. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=157&Itemid=89&year=2011&month=08&day=13&title=north-bay-dystonia-sg-meeting&uid=34fead075feda77c759f4f1df2925fde
15. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=242&Itemid=89&year=2011&month=09&day=27&title=the-university-of-miami-south-florida-dystonia-support-group&uid=49ae94fb4e127642e33ab2b109263e3c
16. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=147&Itemid=89&year=2011&month=08&day=19&title=6th-john-h-menkes-children-a-family-dystonia-symposium&uid=8c2ce47afdc141a8f8ae81e238afa412
17. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=238&Itemid=89&year=2011&month=08&day=19&title=3rd-annual-minnesota-dystonia-golf-classic&uid=30bdd7c5b7262a9929c22ae4cde0aa2e
18. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=191&Itemid=89&year=2011&month=09&day=17&title=pat-brogan-dewey-beach-sprint-triathlon&uid=eab6c45e747cd9b5992f79ac14c08667&catids=37
19. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=191&Itemid=89&year=2011&month=09&day=17&title=pat-brogan-dewey-beach-sprint-triathlon&uid=eab6c45e747cd9b5992f79ac14c08667&catids=37
20. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=239&Itemid=89&year=2011&month=09&day=17&title=dogs4dystonia-dog-walk-for-awareness-ri&uid=a547c39c7563998d3e734cfad334af4e&catids=38
21. http://www.rsvpbook.com/event.php?455233
22. mailto:treed@dystonia-foundation.org?subject=Dystance4Dystonia%20Program%20Information
23. mailto:enewsletter@dystonia-foundation.org?subject=Thoughts%20about%20eNews
24. http://dmrfenews.blogspot.com/
25. http://www.myspace.com/thedmrf
26. http://www.youtube.com/user/cemiwire
27. http://www.facebook.com/pages/Dystonia-Medical-Research-Foundation/46820882711
28. http://twitter.com/dmrf
29. http://thedmrf.ning.com/
30. http://dystance4dystonia.org/joomla/index.php?option=com_content&view=article&id=47&Itemid=55
31. http://dystance4dystonia.org/joomla/index.php?option=com_content&view=article&id=46&Itemid=54
32. https://amex.justgive.org/nonprofits/donate.jsp?ein=95-3378526
33. http://www.dystonia-foundation.org/pages/combined_federal_campaign/595.php
34. https://secure.cmax.americanexpress.com/Internet/US/Travel/CTN/Components/CTN_ECOMM_TSO_SERVICE_OFFERED/Terms%20and%20Conditions_112443.html