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