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
Monday, August 23, 2010
Monday, August 2, 2010
DMRF eNews - July 2010
DMRF eNews
July 2010 - to ensure delivery, please add
[11]enewsletter@dystonia-foundation.org to your address book.
New Programs - Great ways to raise much needed funds for science!
The Foundation launched two new fundraising programs, Dogs4Dystonia and
Dystance4Dystonia. Join us as we come together in communities across the
country to raise awareness and much needed funds to support our quest for a
cure.
Dogs4Dystonia is a dog walk for everyone, whether you are a dog owner, a dog
lover, or someone who just wants to do something to support the work of the
DMRF in the dystonia community. Look for two upcoming walks in the Fall in New
Jersey and in Pennsylvania.
Don't see a walk scheduled for your neck of the woods? Contact Lissa at
[12]LSalvatierra@dystonia-foundation.org today to find out how you can host
your own Dogs4Dystonia Dog Walk!
____________________________________________________________
Are you ready to join the DMRF in going the Dystance4Dystonia? This is a great
program and another way to raise dystonia awareness and funding.
Those who take part in the Dystance4Dystonia program can participate in
marathons, 10K, 8K, and 5K runs and walks in several communities across the
country. Did you want to host your own Dystance4Dystonia event? Contact Lissa
at [13]LSalvatierra@dystonia-foundation.org, who can help you plan one for your
community.
Both programs offer family, friends, neighbors and colleagues the opportunity
to show their support for the dystonia community while helping to raise much
needed funds for our programming.
A Big THANK YOU!
Congratulations and thank you to our volunteers who have hosted a dog walk or
participated in area runs!
Omaha, NE Dog Walk
Reston, VA Dog Walk
Eugene, OR Marathon
Show your support!
Come out and cheer for members of the Dystance4Dystonia team during their
upcoming runs:
[14]Kara Wilke at the [15]RNR Chicago 1/2 Marathon
[16]Jessica & [17]Aaron Meyer at the [18]Madison Mini-Marathon
[19]Meredith Fain at the [20]RNR Philadelphia 1/2 Marathon
[21]Jen Cannon at the [22]Twin Cities Marathon
[23]Jennifer Molski at the [24]Bank of America Chicago Marathon
Events on the Move
Come out and join us for some of our upcoming events. You're sure to have a
good time in support of a great cause.
2nd Annual MN Dystonia Golf Classic - Join MN Coordinator, Wayne Erickson on
August 16th, during a fun day of golf, dinner and a concert. [25]Click here to
learn more and register!
5th Annual "Dogs for Dystonia... a dog walk and so much more" - Join Central
Jersey Dystonia Support and Action Group on Sunday, September 26th. Activities
include a dog walk, dog adoptions, dog and child photographs, games, contests,
vendors and prizes. Want to register? [26]Click here.
Moving Forward- 4th Annual St. Louis Dystonia Walk-A-Thon - Grab your sneakers
and your friends and join us on Sunday, October 3rd. 5K and 3K routes
available. If you would like to register for Moving Forward, [27]click here.
Dystonia Golf & Tennis Classic and Banquet - Mark your calendars to come out
and join Board member Donna Driscoll to enjoy a day of golf and tennis on
Monday, October 4th. More information coming soon!
Alabama Dystance4Dystonia Run -The Dothan Satellite Support Group of DSGA has
set Saturday, October 9th as the date for the 1st Alabama Dystance4Dystonia
Run. Runners and walkers are welcome for this 5K run or 1 mile fun run/walk.
Come out and help to make this inaugural event a great success! For more
information, email Lissa at [28]LSalvatierra@dystonia-foundation.org.
Dogs4Dystonia Dog Walk- Kingston, PA - Bring your family and your human and
four-legged friends for a fun event to Kirby Park on Saturday, October 16th.
Enjoy the walk, the great company and the knowledge that you are supporting a
great cause. [29]Register today and get those leashes ready!
New Jersey Tricky Tray - Join volunteer and past President Claire Centrella at
the Annual New Jersey Tricky Tray on Thursday, October 28th. Try your luck on
hundreds of prize baskets and join us for a sit down dinner.
* * * * * *
Thank you to our volunteers who have hosted other fun and unique events in
support of the DMRF!
Calvert Nathans Yard Sale
To learn more about how you can bring a Dogs4Dystonia Dog Walk to your
community or how you can go the Dystance4Dystonia, email Lissa at
[30]LSalvatierra@dystonia-foundation.org.
Upcoming Events
[31]
7/07/10 [32]Mount Sinai SG Meeting
7/10/10 [33]New Mexico SG Meeting
[34]Quad-Cities SG Meeting
7/17/10 [35]Baltimore/John Hopkins SG Meeting
[36]San Diego County SG Meeting
8/01/10 [37]RNR Chicago 1/2 Marathon
8/14/10 [38]North Bay California SG Meeting
8/16/10 [39]2nd Annual Minnesota Dystonia Golf Classic
8/21/10 [40]Madison Mini-Marathon
8/28/10 [41]Fairfield, California SG Meeting
9/11/10 [42]New Mexico Dystonia SG Meeting
9/19/10 [43]RNR Philadelphia 1/2 Marathon
9/25/10 [44]Southeast PA SG Meeting
9/26/10 [45]NJ Dogs4Dystonia Dog Walk
[46][47]
[48]
For information about these or other events, please email us at
[49]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:LSalvatierra@dystonia-foundation.org?subject=Dogs4Dystonia
13. mailto:LSalvatierra@dystonia-foundation.org?subject=Dystance4Dystonia
14. http://www.rsvpbook.com/event.php?428837
15. 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
16. http://www.rsvpbook.com/event.php?483218
17. http://www.rsvpbook.com/event.php?410222
18. 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
19. http://www.rsvpbook.com/event.php?466577
20. 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
21. http://www.rsvpbook.com/event.php?419510
22. 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
23. http://www.rsvpbook.com/event.php?429343
24. 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
25. http://www.rsvpbook.com/event.php?401747
26. http://www.dogsfordystonia.com/shop/page/4?shop_param=
27. http://www.rsvpbook.com/event.php?463531
28. mailto:LSalvatierra@dystonia-foundation.org?subject=Alabama%20Dystance4Dystonia%20Run
29. http://www.rsvpbook.com/event.php?449855
30. mailto:LSalvatierra@dystonia-foundation.org?subject=Dogs4Dystonia%20or%20Dystance4Dystonia%20Information
31. 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
32. 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
33. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=91&Itemid=89&year=2010&month=07&day=10&title=new-mexcio-dystonia-sg-meeting&uid=71b384d187fb426fe96fcae098b0578e
34. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=95&Itemid=89&year=2010&month=07&day=10&title=quad-cities-sg-meeting&uid=99f68a39f919185aee41ebd0c972f1af
35. 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
36. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=94&Itemid=89&year=2010&month=07&day=17&title=san-diego-county-sg-meeting&uid=941355ea8444f6a09f3fd35474a179ff
37. 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
38. 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
39. 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
40. 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
41. 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
42. 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
43. 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
44. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalevent.detail&evid=57&Itemid=89&year=2010&month=09&day=25
45. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalevent.detail&evid=31&Itemid=89&year=2010&month=09&day=26
46. 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
47. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=84&Itemid=89&year=2010&month=06&day=12&title=greater-dallas-dystoniadysphonia-sg-meeting&uid=15680f6fb82764c73a8fbc9424072e59
48. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=86&Itemid=89&year=2010&month=06&day=12&title=central-virginia-dysphonia-dystonia-sg-meeting&uid=678a6bbdfa2256a39aa1d83c4689d9d6
49. 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.
Join us on one of our social networks:
[5]
[6]
[7]
[8]
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
July 2010 - to ensure delivery, please add
[11]enewsletter@dystonia-foundation.org to your address book.
New Programs - Great ways to raise much needed funds for science!
The Foundation launched two new fundraising programs, Dogs4Dystonia and
Dystance4Dystonia. Join us as we come together in communities across the
country to raise awareness and much needed funds to support our quest for a
cure.
Dogs4Dystonia is a dog walk for everyone, whether you are a dog owner, a dog
lover, or someone who just wants to do something to support the work of the
DMRF in the dystonia community. Look for two upcoming walks in the Fall in New
Jersey and in Pennsylvania.
Don't see a walk scheduled for your neck of the woods? Contact Lissa at
[12]LSalvatierra@dystonia-foundation.org today to find out how you can host
your own Dogs4Dystonia Dog Walk!
____________________________________________________________
Are you ready to join the DMRF in going the Dystance4Dystonia? This is a great
program and another way to raise dystonia awareness and funding.
Those who take part in the Dystance4Dystonia program can participate in
marathons, 10K, 8K, and 5K runs and walks in several communities across the
country. Did you want to host your own Dystance4Dystonia event? Contact Lissa
at [13]LSalvatierra@dystonia-foundation.org, who can help you plan one for your
community.
Both programs offer family, friends, neighbors and colleagues the opportunity
to show their support for the dystonia community while helping to raise much
needed funds for our programming.
A Big THANK YOU!
Congratulations and thank you to our volunteers who have hosted a dog walk or
participated in area runs!
Omaha, NE Dog Walk
Reston, VA Dog Walk
Eugene, OR Marathon
Show your support!
Come out and cheer for members of the Dystance4Dystonia team during their
upcoming runs:
[14]Kara Wilke at the [15]RNR Chicago 1/2 Marathon
[16]Jessica & [17]Aaron Meyer at the [18]Madison Mini-Marathon
[19]Meredith Fain at the [20]RNR Philadelphia 1/2 Marathon
[21]Jen Cannon at the [22]Twin Cities Marathon
[23]Jennifer Molski at the [24]Bank of America Chicago Marathon
Events on the Move
Come out and join us for some of our upcoming events. You're sure to have a
good time in support of a great cause.
2nd Annual MN Dystonia Golf Classic - Join MN Coordinator, Wayne Erickson on
August 16th, during a fun day of golf, dinner and a concert. [25]Click here to
learn more and register!
5th Annual "Dogs for Dystonia... a dog walk and so much more" - Join Central
Jersey Dystonia Support and Action Group on Sunday, September 26th. Activities
include a dog walk, dog adoptions, dog and child photographs, games, contests,
vendors and prizes. Want to register? [26]Click here.
Moving Forward- 4th Annual St. Louis Dystonia Walk-A-Thon - Grab your sneakers
and your friends and join us on Sunday, October 3rd. 5K and 3K routes
available. If you would like to register for Moving Forward, [27]click here.
Dystonia Golf & Tennis Classic and Banquet - Mark your calendars to come out
and join Board member Donna Driscoll to enjoy a day of golf and tennis on
Monday, October 4th. More information coming soon!
Alabama Dystance4Dystonia Run -The Dothan Satellite Support Group of DSGA has
set Saturday, October 9th as the date for the 1st Alabama Dystance4Dystonia
Run. Runners and walkers are welcome for this 5K run or 1 mile fun run/walk.
Come out and help to make this inaugural event a great success! For more
information, email Lissa at [28]LSalvatierra@dystonia-foundation.org.
Dogs4Dystonia Dog Walk- Kingston, PA - Bring your family and your human and
four-legged friends for a fun event to Kirby Park on Saturday, October 16th.
Enjoy the walk, the great company and the knowledge that you are supporting a
great cause. [29]Register today and get those leashes ready!
New Jersey Tricky Tray - Join volunteer and past President Claire Centrella at
the Annual New Jersey Tricky Tray on Thursday, October 28th. Try your luck on
hundreds of prize baskets and join us for a sit down dinner.
* * * * * *
Thank you to our volunteers who have hosted other fun and unique events in
support of the DMRF!
Calvert Nathans Yard Sale
To learn more about how you can bring a Dogs4Dystonia Dog Walk to your
community or how you can go the Dystance4Dystonia, email Lissa at
[30]LSalvatierra@dystonia-foundation.org.
Upcoming Events
[31]
7/07/10 [32]Mount Sinai SG Meeting
7/10/10 [33]New Mexico SG Meeting
[34]Quad-Cities SG Meeting
7/17/10 [35]Baltimore/John Hopkins SG Meeting
[36]San Diego County SG Meeting
8/01/10 [37]RNR Chicago 1/2 Marathon
8/14/10 [38]North Bay California SG Meeting
8/16/10 [39]2nd Annual Minnesota Dystonia Golf Classic
8/21/10 [40]Madison Mini-Marathon
8/28/10 [41]Fairfield, California SG Meeting
9/11/10 [42]New Mexico Dystonia SG Meeting
9/19/10 [43]RNR Philadelphia 1/2 Marathon
9/25/10 [44]Southeast PA SG Meeting
9/26/10 [45]NJ Dogs4Dystonia Dog Walk
[46][47]
[48]
For information about these or other events, please email us at
[49]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:LSalvatierra@dystonia-foundation.org?subject=Dogs4Dystonia
13. mailto:LSalvatierra@dystonia-foundation.org?subject=Dystance4Dystonia
14. http://www.rsvpbook.com/event.php?428837
15. 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
16. http://www.rsvpbook.com/event.php?483218
17. http://www.rsvpbook.com/event.php?410222
18. 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
19. http://www.rsvpbook.com/event.php?466577
20. 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
21. http://www.rsvpbook.com/event.php?419510
22. 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
23. http://www.rsvpbook.com/event.php?429343
24. 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
25. http://www.rsvpbook.com/event.php?401747
26. http://www.dogsfordystonia.com/shop/page/4?shop_param=
27. http://www.rsvpbook.com/event.php?463531
28. mailto:LSalvatierra@dystonia-foundation.org?subject=Alabama%20Dystance4Dystonia%20Run
29. http://www.rsvpbook.com/event.php?449855
30. mailto:LSalvatierra@dystonia-foundation.org?subject=Dogs4Dystonia%20or%20Dystance4Dystonia%20Information
31. 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
32. 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
33. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=91&Itemid=89&year=2010&month=07&day=10&title=new-mexcio-dystonia-sg-meeting&uid=71b384d187fb426fe96fcae098b0578e
34. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=95&Itemid=89&year=2010&month=07&day=10&title=quad-cities-sg-meeting&uid=99f68a39f919185aee41ebd0c972f1af
35. 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
36. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=94&Itemid=89&year=2010&month=07&day=17&title=san-diego-county-sg-meeting&uid=941355ea8444f6a09f3fd35474a179ff
37. 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
38. 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
39. 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
40. 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
41. 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
42. 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
43. 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
44. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalevent.detail&evid=57&Itemid=89&year=2010&month=09&day=25
45. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalevent.detail&evid=31&Itemid=89&year=2010&month=09&day=26
46. 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
47. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=84&Itemid=89&year=2010&month=06&day=12&title=greater-dallas-dystoniadysphonia-sg-meeting&uid=15680f6fb82764c73a8fbc9424072e59
48. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=86&Itemid=89&year=2010&month=06&day=12&title=central-virginia-dysphonia-dystonia-sg-meeting&uid=678a6bbdfa2256a39aa1d83c4689d9d6
49. 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.
Join us on one of our social networks:
[5]
[6]
[7]
[8]
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
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