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]
http://www.facebook.com/pages/dogs4dystonia/310473013264

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]

[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
© 2009 DMRF

DMRF eNews - January 2010

DMRF eNews

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

Happy New Year
From everyone at the DMRF, a Happy New Year. We are looking forward to
continuing the momentum that the events of 2009 generated into 2010. There
is much to be grateful for as we look back at the
[http://www.dystonia-foundation.org/2009Review] milestones from last year.

· The wonderful
[http://www.dystonia-foundation.org/pages/research_in_2009/148.php]
research projects supported by the DMRF in 2009. We are beginning to
receive progress reports from the work funded by the Foundation last year
and it is exciting to see results. We are always pleased with our
fellowships – funding young investigators is so important.

· Working in partnership with the Foundation for Dystonia
Research, the DMRF launched a $1.8 million dollar research contract to
identify and validate novel molecular targets for dystonia drug discovery
and development. This project is possible because of the many years of
research the DMRF has supported – including the DMRF funded discovery of
the DYT1 gene in 1997. The first phase of this enormous scientific project
was completed in 2009.

· Additionally, the DMRF is contracting for the development of a
new animal model for dystonia. This is also important for drug
discovery/development.

· DMRF continues to hold discussions with pharma to engage them
in dystonia. In 2009 a significant meetings were held and we are
optimistic about the interest expressed in dystonia – developing into
additional, new treatments for dystonia.

· DMRF was pleased to join with Tyler’s Hope in launching a
patient registry for DYT1 dystonia – another important element in getting
new treatments on the market.

· Our scientific meetings continue to be important. Last year,
the DMRF hosted a meeting for young investigators, a meeting on myclonus
dystonia and a number of other meetings to help support the development of
the NIH/ORD Dystonia Coalition program.

· The [http://www.youtube.com/watch?v=Mc4CZAD5rw8] Children &
Family Symposium was a major success – with many new families learning
that they are not alone. This combined with our ongoing educational
efforts and the fabulous support/education efforts of our support groups
has provided accurate information to thousands of people.

· The
[http://www.dystonia-foundation.org/pages/dystonia_coalition_obtains_ord_grant/362.php]
Dystonia Coalition – the clinical research program approved by NIH is a
major step forward for the community. The DMRF is proud to serve as an
administrative center for this important program – providing
administrative support for meetings, payments to the clinical sites, pilot
projects and this past year, to have co-sponsored the Career Development
Award.

· Last – but certainly not least – we are grateful to join
with our advocacy partners the Benign Essential Blepharospasm Research
Foundation, DySTonia, Inc., the National Spasmodic Dysphonia Association
and the National Spasmodic Torticollis Assocition in celebrating
[http://www.dystonia-foundation.org/pages/dac_paves_way_for_new_research_funding/367.php]
the addition of dystonia to the list of eligible diseases for funding
through the Congressionally Directed Medical Research Program. This was a
wonderful way to end the year.

2010 looks to be a year of continued progress. The research grant
applications recently submitted look good – these will be reviewed in
February when our Medical & Scientific Advisory Council will be meeting.
We will be launching new scientific exploration through our contract
program and look forward to sponsoring and participating in key scientific
meetings throughout the year.

We also look forward to continuing our community education programs,
webinars, a western regional meeting and another successful
[http://www.rsvpbook.com/event.php?470398] Advocacy Day this spring.
Achieving our goal of a cure for all forms of dystonia can’t be done
alone. We appreciate the partnerships we have globally and thank all of
you for your support of the DMRF. We look forward to sharing with you the
progress of the coming year and to hearing from you about how we can help
you until that wonderful day when our work is finished.

Upcoming Events

1/30/10 [http://www.rsvpbook.com/event.php?406573] Dystonia Patient
Educational Symposium
2/12/10 [http://www.rsvpbook.com/event.php?449115] MN Sleigh Ride,
Dinner and Concert

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]

[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
© 2009 DMRF

DMRF eNews - November 2009

DMRF eNews

November 2009 - to ensure delivery, please add
[mailto:enewsletter@dystonia-foundation.org]
enewsletter@dystonia-foundation.org to your address book.

NIH Announces Expansion of Rare Diseases Clinical Research Network
The DMRF is pleased to be joining other members of the recently
announced, National Institutes of Health (NIH) funded Dystonia Coalition
this week for its first annual meeting. The meeting will review the three
clinical projects supported by this cooperative agreement and provide an
opportunity for the dystonia foundations to present on what they are
looking for from this important effort. DMRF is honored to work with
Bachmann-Strauss Dystonia & Parkinson Foundation (BSDPF), the Benign
Essential Blepharospam Foundation (BEBRF), DySTonia, Inc. (DI), the
National Spasmodic Dysphonia Association (NSDA), the National Spasmodic
Torticollis Association (NSTA), Tyler ’s Hope and WE MOVE along with
Drs. Buz Jinnah, Joel Perlmutter, Cindy Comella and Christy Ludlow,
representatives from NINDS and many, many other leading clinical
researchers in fulfilling the promise of this program. Stay tuned for
additional information about this meeting. Visit the
[http://dmrfinsights.blogspot.com/] DMRF Insights Blog next week to learn
more.

DMRF Funded Research in 2009
Check out the DMRF funded research projects for 2009. We are proud of
the work being carried out by these investigators and look forward to
projects presented for next year.

For more information about this research, please
[http://www.dystonia-foundation.org/pages/research_in_2009/148.php] click
here.

Awareness Update

Billy McLaughlin, DMRF Ambassador, continues to raise awareness about
dystonia. He is slated to perform at the Space in Evanston on Saturday,
November 7th. [http://www.evanstonspace.com/] Click here for more
information.

Community Day 2009 - November 14th

Are you looking for ways to save money this holiday season? Consider
purchasing a $5
[http://www.dystonia-foundation.org/filebin/Morepdfs/Community%20Day%2009%20Flyer.pdf]
coupon book that will provide timely, cost saving coupons at Bon Ton Stores
Nationwide. All money raised from the sale of the coupon books will
support the DMRF.

Email Emma at [mailto:epinto@dystonia-foundation.org]
epinto@dystonia-foundation.org to purchase your coupon book today!

Advocacy

The DMRF would like to invite you to attend Dystonia Advocacy Day 2010 on
Tuesday, May 4^th and Wednesday, May 5^th in Washington , DC . Dystonia
Advocacy Day is a popular annual event that brings patients, family
members, and friends from across the country together on Capitol Hill to
advocate on behalf of the dystonia community. Participants have the
opportunity to attend a networking dinner, receive state-of-the-science
updates on dystonia research, engage in comprehensive advocacy training
sessions, and meet with their Members of Congress.

If you would like additional information on Dystonia Advocacy Day 2010 or
if you would like to preliminarily register for the event and receive all
relevant updates and information, please visit the following section of the
DMRF website:
[http://www.dystonia-foundation.org/pages/advocacy_day_2009/476.php]
http://www.dystonia-foundation.org/pages/advocacy_day_2009/476.php.

Upcoming Events

11/11/09 Omaha Awareness Event

11/14/09
[http://www.dystonia-foundation.org/pages/view_event/225.php?id=48]
Community Day 2009

12/23/09
[http://www.dystonia-foundation.org/pages/view_event/225.php?id=73] Help
Find A Cure for Dystonia

Happy Thanksgiving

Order the child in your life a DMRF tshirt today!

Show your support and raise awareness. Order your DMRF tshirt today for
$20.

Sizes available:

Children's S, M, L

(available in grey & white)

To order your shirt,

[https://dystonia.securesites.net/dystonia/pages/merchandise/277.php]
click here

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]

[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
© 2009 DMRF

DMRF eNews - October 2009

DMRF eNews

October 2009 - to ensure delivery, please add
[mailto:enewsletter@dystonia-foundation.org]
enewsletter@dystonia-foundation.org to your address book.

Monumental Research Grant Awarded to the Dystonia Community

We are pleased to tell you that the National Institutes of Health (NIH)
have announced the funding of a five year, $6 million award aimed at
forming a multicenter Dystonia Coalition to cultivate a better
understanding of the primary focal dystonias and find better therapies,
including Cervical Dystonia, Spasmodic Dysphonia, Blepharospasm, and
others. Leading the Coalition will be H. A. Jinnah, MD, PhD, of Emory
University and his co-director is Joel Perlmutter, MD of Washington
University. The Coalition will bring together the most committed dystonia
researchers in North America and Europe, along with dystonia patient
advocacy groups. The Dystonia Medical Research Foundation (DMRF) is proud
to play an integral role by providing logistical and planning support for
the Coalition. The first meeting of the Coalition is scheduled for November
5th.

For more information, please [http://dmrfinsights.blogspot.com/] click
here.

DMRF receives the Child Neurology Foundation Advocacy Award

The DMRF has been selected as the 2009
[http://childneurologyfoundation.org/main_awards_4.cfm] Child Neurology
Foundation’s Advocacy Award of Merit recipient. We are thrilled to
receive this award from CNF, an organization that is dedicated to
advocating for children and adolescents with neurologic disorders. In
announcing the award, CNF states, “The Dystonia Medical Research
Foundation demonstrated innovativeness and achieved phenomenal impact on
behalf of the greater community. It gladdens us that we can honor the
organization nominated by Dr. Jonathan Mink. DMRF is regarded as one of the
strongest organizations providing advocacy while also engaging the
scientific community to pursue research.”

Awareness Update

Billy McLaughlin, DMRF Ambassador, continues to raise awareness about
dystonia. [http://abclocal.go.com/wls/video?id=7023468] Click here to see
his interview on ABC7.

H1N1 and You

As we enter into flu season and the H1N1 swine flu continues to make
headlines, the DMRF is receiving increasing inquiries about whether it is
safe for individuals who get botulinum toxin injections to get flu
vaccines. The answer is that it is safe to have both kinds of injected
medicines, but some simple precautions should be taken.
To learn more about flu precautions,
[http://www.dystonia-foundation.org/pages/botulinum_toxin___flu_vaccine/555.php]
click here.

Community Day 2009

Are you looking for ways to save money this holiday season? Consider
purchasing a $5
[http://www.dystonia-foundation.org/filebin/Morepdfs/Community%20Day%2009%20Flyer.pdf]
coupon book that will provide timely, cost saving coupons at Bon Ton Stores
Nationwide. All money raised from the sale of the coupon books will
support the DMRF.

Email Emma at [mailto:epinto@dystonia-foundation.org]
epinto@dystonia-foundation.org to purchase your coupon book today!

Dystonia, Stress & the Holidays

Does the holiday season stress you out? Do you want to share how you are
feeling?
[http://www.surveymonkey.com/s.aspx?sm=pJ1aT_2f0gzkRLiZvzjx_2f4JA_3d_3d]
Click here to partipate in the DMRF survey, Dystonia, Stress & the
Holidays.

Upcoming Events

10/11/09
[http://www.dystonia-foundation.org/pages/view_event/225.php?id=72] NJ Dogs
for Dystonia

10/11/09
[http://www.dystonia-foundation.org/pages/going_the_dystance_for_dystonia/564.php]
Bank of America Chicago Marathon

10/17/09
[http://www.dystonia-foundation.org/pages/view_event/225.php?id=173]
Dystonia Poker Run

10/25/09
[http://www.dystonia-foundation.org/pages/view_event/225.php?id=57] Basket
Bash

10/26/09
[http://www.dystonia-foundation.org/pages/view_event/225.php?id=87]
Dystonia Golf and Tennis Classic

10/29/09
[http://www.dystonia-foundation.org/pages/view_event/225.php?id=77] NJ
Tricky Tray

11/14/09
[http://www.dystonia-foundation.org/pages/view_event/225.php?id=48]
Community Day 2009

12/23/09
[http://www.dystonia-foundation.org/pages/view_event/225.php?id=73] Help
Find A Cure for Dystonia

Order your DMRF tshirt today!

Show your support and raise awareness. Order your DMRF tshirt today for
$20.

Sizes available:

Children's S, M, L

(available in grey & white)

Women's S, M, L and XL

(available in blue & white)

Women's XXL

(available in white only)

Men's S, M, L, XL and 2X

(available in grey & white)

Please note that women's shirts are fitted and tend to run small. If
unsure of sizing, please order an equivalent size in Men's.

To order your shirt,

[https://dystonia.securesites.net/dystonia/pages/merchandise/277.php]
click here

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]

[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
© 2009 DMRF