DMRF eNews - May 2011

DMRF eNews

May 2011

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

Registration is open for the Children & Family Dystonia Symposium

The 6th John H. Menkes Children & Family Dystonia Symposium will take place
August 19-21, 2011 at the Holiday Inn Mart Plaza, Chicago, IL.

The purpose of the symposium is to bring individuals and families together to
learn about dystonia and the DMRF, interact with experts, and find support
among 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 to learn more information and to register.

Dystonia Research Funding

The DMRF is pleased to announce that dystonia has been included in the FY11
Department of Defense Peer-Reviewed Medical Research Program. The inclusion of
dystonia as an eligible condition was made possible through the efforts of the
Dystonia Advocacy Network (DAN), which is compromised of the Benign Essential
Blepharospasm Research Foundation, DySTonia, Inc., the Dystonia Medical
Research Foundation, the National Dysphonia Association, and the National
Spasmodic Torticollis Association. To learn more, please[3] click here.

Advocacy Day Update

Thank you to the many DMRF advocates who joined with other Dystonia Advocacy
Network members for Advocacy Day in Washington, DC on May 10th and 11th.

Nearly 150 meetings were held with Members of Congress and/or their staff to
discuss the need for NIH funding, including dystonia on the DOD list of
eligible diseases for research funding through the Peer Review Medical Research
Program and efforts to ensure patient access to qualified physicians and
approved dystonia treatments. You all did a great job!

If you are interested in becoming an advocate please visit the DAN website at
[4]www.dystonia-advocacy.org.

Have you become a face yet?

The DMRF is pleased to launch a new section of the website called "Faces of
Dystonia." [5]Click here to view.

"Faces of Dystonia" celebrates individuals with dystonia and demonstrates the
diversity in the community--dystonia affects people of all backgrounds, ages,
and genders.

The DMRF will be adding stories to the mosaic all year. To add your experience
to the "Faces" of Dystonia" collection, [6]click here to fill out a brief form
and upload a photo. Feel free to share this link with others living with
dystonia - the more stories, the merrier!

Thank you for your participation.

Go the Dystance 4 Dystonia!

The DMRF is fortunate to have dedicated and creative volunteers around the
country who work hard to promote dystonia awareness and raise funds for
research. If you are interested in learning about our programs, contact Tammy
at [7]treed@dystonia-foundation.org.

5/21 - [8]Dogs4Dystonia Dog Walk - Reston, VA

6/05 - [9]Dystance4Dystonia Walk - Florence, MA

6/05 - [10]San Diego Marathon - San Diego, CA

To find out what's going on in your neighborhood or anywere else just [11]click
here.

Monthly Donor Program

Giving to the DMRF through our Monthly Giving Plan provides sustainable support
of our programs. Your monthly gift will help cut postage, paper, administrative
and overhead costs. Become a partner in the DMRF Monthly Giving Plan today!
Call us to find out more at 312-755-0198 or 800-377-3978 or email us at
[12]dystonia@dystonia-foundation.org.

Upcoming Support Group Meetings

5/21 - [13]North Bay Dystonia (Santa Rosa, CA)

5/21 - [14]Arkansas Dystonia (Sherwood, AR)

5/21 - [15]New Mexico Dystonia (Albuquerque, NM)

5/21 - [16]Dystonia Support & Advocacy Group of San Diego County (CA)

6/04 - [17]Los Angeles Dystonia (Los Angeles, CA)

6/11 - [18]Southwest Region of Florida (Tampa, FL)

7/13 - [19]Quad-City Dystonia (Eldridge, IA)

8/13 - [20]North Bay Dystonia (Santa Rosa, CA)

Coming Soon...

Dystonia Awareness Week - June 5-11, 2011

Twitter Awareness Day - Tuesday, June 7, 2011

Tell us how we are doing. We would love to hear your thoughts about the
newsletter. Email us today at[21] enewsletter@dystonia-foundation.org

Would you like to access the newsletter 24/7? [22]dmrfenews.blogspot.com

Would you like to receive updates by text message?

Text DYSTONIA to 90999

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

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

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

* Please see Terms & Conditions below

[31]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
[32]membershiprewards.com/terms for more information.

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

References

1. mailto:enewsletter@dystonia-foundation.org
2. http://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. http://www.dystonia-foundation.org/pages/dystonia_included_in_dept_of_defense_s_research_program/626.php
4. http://dystonia-advocacy.org/
5. http://www.dystonia-foundation.org/pages/faces_of_dystonia/620.php
6. http://www.dystonia-foundation.org/pages/faces_of_dystonia/611.php
7. mailto:treed@dystonia-foundation.org?subject=Dystance4Dystonia
8. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=208&Itemid=89&year=2011&month=05&day=21&title=dogs4dystonia-dog-walk-reston-va&uid=216fdf93ceb26b7ba867b0a06ee59439&catids=38
9. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=211&Itemid=89&year=2011&month=06&day=05&title=dystance4dystonia-walk-for-dystonia-awarenessflorence-ma&uid=547f701de078d176119ca140063f0301&catids=37
10. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=167&Itemid=89&year=2011&month=06&day=05&title=san-diego-marathon&uid=4d2198a9f021376d8fc70453dccf350b&catids=37
11. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&view=cat&task=cat.listevents&Itemid=89
12. mailto:dystonia@dystonia-foundation.org?subject=Monthly%20Giving%20Plan
13. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=156&Itemid=89&year=2011&month=05&day=21&title=north-bay-dystonia-sg-meeting&uid=7521020e6a567162de21e822baeedc9e
14. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=220&Itemid=89&year=2011&month=05&day=21&title=arkansas-dystonia-sg-meeting&uid=93b091bc928195bc0348981a2ea71369
15. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=219&Itemid=89&year=2011&month=05&day=21&title=new-mexico-dystonia-sg-meeting&uid=86575f011452d65fecc48f472b2c6956
16. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=207&Itemid=89&year=2011&month=05&day=21&title=dystonia-support-a-advocacy-group-of-san-diego-county&uid=271bd0cac644525b4a052d957e9b8089
17. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=222&Itemid=89&year=2011&month=06&day=04&title=los-angeles-dystonia-support-group&uid=044429d13c58254d05ced864adbb772c
18. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=225&Itemid=89&year=2011&month=06&day=11&title=southwest-region-of-florida&uid=37b663d07011d0be799ab288bbc93474
19. 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
20. 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
21. mailto:enewsletter@dystonia-foundation.org?subject=Thoughts%20about%20eNews
22. http://dmrfenews.blogspot.com/
23. http://www.myspace.com/thedmrf
24. http://www.youtube.com/user/cemiwire
25. http://www.facebook.com/pages/Dystonia-Medical-Research-Foundation/46820882711
26. http://twitter.com/dmrf
27. http://thedmrf.ning.com/
28. http://dystance4dystonia.org/joomla/index.php?option=com_content&view=article&id=47&Itemid=55
29. http://dystance4dystonia.org/joomla/index.php?option=com_content&view=article&id=46&Itemid=54
30. https://amex.justgive.org/nonprofits/donate.jsp?ein=95-3378526
31. http://www.dystonia-foundation.org/pages/combined_federal_campaign/595.php
32. https://secure.cmax.americanexpress.com/Internet/US/Travel/CTN/Components/CTN_ECOMM_TSO_SERVICE_OFFERED/Terms%20and%20Conditions_112443.html