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