Thursday, September 1, 2011

DMRF eNews - August 2011

DMRF eNews

August 2011


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

Investigators Close In on Function of TorsinA

A significant piece of the dystonia puzzle has been identified helping us to
understand why a mutation in the DYT1 gene might lead to dystonia. This
research study conducted by DMRF grant recipient Flavia Nery, PhD, and longtime
dystonia investigator Xandra Breakefield, PhD, and their colleagues.

DMRF Science Officer Jan Teller, MA, PhD explains, "Essentially, all dystonia
disorders are considered a neural circuits malfunction. Therefore finding any
molecular or biochemical way to put these circuits back 'in order' would be
beneficial to all dystonias. Understanding how this works in DYT1 dystonia may
suddenly open up new possibilities for designing dystonia-specific treatments."

The DYT1 gene is associated with a specific form of early onset generalized
dystonia, also called Oppenheim's dystonia. Scientist have been working for
years to make the connection between this mutated protein and the electrical
signals in the brain that lead to dystonia symptoms. To read more about this
study, please [2]click here.

2011 Research Funding

The goal of the DMRF Science Program is to support the discovery of improved
therapies and ultimately a cure. The DMRF is dedicated to stimulating the field
of dystonia reserch and supporting projects that are necessary to accelerate
this progress. Each of these projects is meaningful because it addresses one or
more of the core directions necessary to advance the field. To view this years
award recipients [3]CLICK HERE.

Congratulations to this year's award recipients and thank you to all of our
supporters for making this research funding possible.

Results are in from 'Design the Coolest Bag' Ever Contest!

The DMRF is pleased to announce that a design was selected for the official bag
of the DMRF 6th John H. Menkes Children & Family Dystonia Symposium. The
selected design was chosen by the all-volunteer planning committee (by blind
vote.) The selected design belongs to...[4]click here to view results.

Children and Family Dystonia Symposium

The DMRF 6th John H. Menkes Children & Family Symposium will be taking place on
August 19-21 at the Holiday Inn Mart Plaza in Chicago.

We are looking forward to seeing all the families that have participated in the
past years as well as the new families that will be joining us to learn about
dystonia and the DMRF. This meeting includes sessions designed for:
dystonia-affected children (ages 6 and up) and teens, parents and siblings of
affected children, dystonia-affected parents, and dystonia-affected 20- and
30-somethings.

If you would like to register, [5]CLICK HERE.

Help Make Sure NIH Gets Funding

The DMRF needs your help to ensure that the National Institutes of Health (NIH)
receives appropriate support for fiscal year 2012 so that critical dystonia
research will be funded. [6]Click here to learn how you can help us support
funding critical research.

"Faces of Dystonia" Share your Story

Danielle is part of the DMRF because education and awareness is important to
her. Read more about Danielle and learn what motivates her to be a Face of
Dystonia.

Share your story here! [7]http://www.dystonia-foundation.org/faces

DMRF invites everyone to participate in this special project.

To view "Faces of Dystonia" [8]CLICK HERE.

Dogs4Dystonia is for Everyone

Dogs4Dystonia are dog walks for everyone, whether you are a dog owner, a dog
lover, or someone just looking to do something for the dystonia community. This
is a great way to bring family, friends, and the community together for a fun
time in support of a good cause.

Dogs4Dystonia Virtual Dog Walk

The 2nd Annual Dogs4Dystonia Virtual Dog Walk will be taking place the entire
month of September- any time, day or night - you and your dog are able to walk
when you want. This event is a great way to spend time with your canine
companion and support a great cause.

When Dee Linde was diagnosed with dystonia, she decided to get involved with
the DMRF to find a cure. She has been involved with the DMRF ever since. Dee is
the leader of her local support group in Portalnd, Oregon. As a dystonia
advocate she has testified before the Senate Defense

Appropirations Subcommittee to keep dystonia as one of the "conditions eligible
for study" through the Department of Defense's (DOD) Congressionally directed,
Medical Research Program and Dee was just selected as consumer reviewer as part
of the DOD's dystonia research panel. "I have made so many good friends, and so
many people have touched my life in ways I can't put into words. I feel like a
better, richer person because of these experiences, and I am grateful to the
DMRF. Together we will find the cure, " says Dee.

In addition to her work with her local support group and as an advocate for the
rights of those impacted by dystonia, Dee also participated in last year's
virtual dog walk. Dee and her dog, Lily, love to walk, especially when it's for
a good cause. She is currently looking forward to participating again in this
years Virtual Dog Walk and will be attending a live Dogs4Dystonia Dog Walk so
she can bring it to her community in Portland.

To participate in the 2nd Annual Dogs4Dystonia Virtual Dog Walk, [9]CLICK HERE
to learn more.

With the support of the DMRF you are able to host your own event.

Don't wait any longer, contact Tammy at[10] treed@dystonia-foundation.org to
learn more and get started today.

Upcoming Support Group Meetings

08/13 - [11]Alabama Support Group (Dothan, AL)

08/13 - [12]North Bay Dystonia SG Meeting (Santa Rosa, CA)

08/16 - [13]Central Oregon Dystonia Support Group (Bend, OR)

08/27 - [14]ST/Dystonia Support Group (Fairfield, CA)

09/10 - [15]Rhode Island Dystonia/Neuro Mov Disorder (Providence, RI)

09/17 - [16]Dystonia Support/Advocacy Group (San Diego, CA)

09/20 - [17]Central Oregon Dystonia Support Group (Bend, OR)

09/27 - [18]University of Miami South Florida Dystonia (N Miami, FL)

10/18 - [19]Central Oregon Dystonia Support Group (Bend, OR)

10/22 - [20]Quad-City Dystonia Support Group (Eldridge, IA)

10/25 - [21]Univ of Miami South FL/Broward Palm Beach Group (FL)

Coming Soon...

08/19 - [22]3rd Annual Minnesota Dystonia Golf Classic (Cannon Falls, MN)

09/17 -[23] [24]Dewey Beach Sprint Triathlon -Pat Brogan (Dewey Beach, DE)

09/17 - [25]Dogs4Dystonia Dog Walk for Awareness (Warwick, RI)

09/24 -[26] 2nd Annual Alabama Dystance4Dystonia Run (Dothan, AL)

10/01 - [27]Billy McLauglin Concert (Asheville, NC)

10/01 - [28]Dystance4Dystonia Walk for Awareness (Apple Valley, CA)

10/02 - [29]Maine Marathon - Jennifer Thorne (Portland, ME)

10/02 - [30]Dogs4Dystonia - (Omaha, NE)

10/03 - [31]5th Annual Dystonia Golf/Tennis Classic (Germantown, MD)

10/09 - [32]Bank of America Chicago Marathon (Chicago, IL)

10/09 - [33]6th Annual Dogs4Dystonia (Freehold, NJ)

10/15 - [34]Community Education Meeting (Ann Arbor, MI)

10/16 - [35]Nike Women's Marathon (San Francisco, CA)

10/16 - [36]Dystance4Dystonia Walk for a Cure (Santa Clarita, CA)

10/20 - [37]5th International Dystonia Symposium (Barcelona, Spain)

10/27 - [38]18th Annual Tricky Tray and Dinner (Woodland Park, NJ)

10/28 - [39]Pleasant Grove Terror! (Richmond, VA)

10/28 - [40]NE Regional Meeting

10/29 - [41]NE Regional Meeting

10/30 - [42]Dogs4Dystonia - Sheila Williams (Forth Worth, TX)

For more information on the Dystance4Dystonia program, please email Tammy at
[43]treed@dystonia-foundation.org or

give her a call at 312-447-5098 today.

Tell us how we are doing. We would love to hear your thoughts about the
newsletter. Email us today at[44] enewsletter@dystonia-foundation.org

Would you like to access the newsletter 24/7? [45]dmrfenews.blogspot.com

Would you like to receive updates by text message?

Text DYSTONIA to 90999

Join us on one of our social networks:

[46][jpeg] [47][jpeg] [48][jpeg]

[49][jpeg] [50][jpeg]

In This Issue

Unvestigators Close In on

Function of TorsinA

2011 Research Funding

Selected design for Bag Contest

Children & Family Symposium

Help Make Sure NIH Gets Funding

Faces of Dystonia

Dystance4Dystonia

Dogs4Dystonia

Upcoming Support Group Mtgs

Coming Soon

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

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

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

* Please see Terms & Conditions below

[54]Are you a federal government or military employee looking to support the
work of the DMRF?

Dystonia Medical Research Foundation One East Wacker Drive, Suite 2810,
Chicago, IL 60601-1905

Phone (312) 755-0198 Toll Free (800) 377-3978 Fax (312) 803-0138

Web www.dystonia-foundation.org Email dystonia@dystonia-foundation.org

* Terms and Conditions for the Membership Rewards program apply. Visit
[55]membershiprewards.com/terms for more information.

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

References

1. mailto:enewsletter@dystonia-foundation.org
2. http://www.dystonia-foundation.org/pages/investigators_close_in_on_function_of_torsina/651.php
3. http://www.dystonia-foundation.org/pages/research_in_2011/148.php
4. http://www.dystonia-foundation.org/pages/bag_design_contest_winner/634.php
5. http://www.dmrfevents.org/event.php?465144
6. http://www.dystonia-foundation.org/pages/help_make_sure_nih_gets_much_needed_funding/654.php
7. http://www.dystonia-foundation.org/pages/faces/611.php
8. http://www.dystonia-foundation.org/pages/faces_of_dystonia/620.php
9. http://dystance4dystonia.org/joomla/index.php?option=com_content&view=article&id=77&Itemid=91
10. mailto:treed@dystonia-foundation.org?subject=Dystance4Dystonia%20or%20Dogs4Dystonia%20Info
11. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=258&Itemid=89&year=2011&month=08&day=13&title=alabama-support-group&uid=0086e0ddc6a802822691933a45bae3bd
12. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=157&Itemid=89&year=2011&month=08&day=13&title=north-bay-dystonia-sg-meeting&uid=34fead075feda77c759f4f1df2925fde
13. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalevent.detail&evid=224&Itemid=89&year=2011&month=08&day=16
14. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=260&Itemid=89&year=2011&month=08&day=27&title=stdystonia-support-group-fairfield-ca-&uid=c338a51f99227b24d6a72fa1d13d06bc
15. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=259&Itemid=89&year=2011&month=09&day=10&title=rhode-island-dystonia-a-neurological-movement-disorder-sg-meeting&uid=d05a194986af266ce6bdc144cc6bd555
16. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=249&Itemid=89&year=2011&month=09&day=17&title=dystonia-support-a-advocacy-group-of-san-diego-county&uid=dc8aa1a29b8d45ee875bd5f403474965
17. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=263&Itemid=89&year=2011&month=09&day=20&title=central-oregon-dystonia-support-group&uid=0b479bef620cfac243d895675b812d3f
18. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=242&Itemid=89&year=2011&month=09&day=27&title=the-university-of-miami-south-florida-dystonia-support-group&uid=49ae94fb4e127642e33ab2b109263e3c
19. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=264&Itemid=89&year=2011&month=10&day=18&title=central-oregon-dystonia-support-group&uid=6a2daf3a1bfc384718a461ac575794b2
20. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=261&Itemid=89&year=2011&month=10&day=22&title=quad-city-dystonia-support-group&uid=b738c592364244e8a97ce6e6932f1b12
21. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=243&Itemid=89&year=2011&month=10&day=25&title=the-university-of-miami-south-florida-dystonia-support-group-mtg-browardpalm-beach-group&uid=a477b500c6d2288e738f6f823bb7ff54
22. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=238&Itemid=89&year=2011&month=08&day=19&title=3rd-annual-minnesota-dystonia-golf-classic&uid=30bdd7c5b7262a9929c22ae4cde0aa2e
23. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=191&Itemid=89&year=2011&month=09&day=17&title=pat-brogan-dewey-beach-sprint-triathlon&uid=eab6c45e747cd9b5992f79ac14c08667&catids=37
24. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=191&Itemid=89&year=2011&month=09&day=17&title=pat-brogan-dewey-beach-sprint-triathlon&uid=eab6c45e747cd9b5992f79ac14c08667&catids=37
25. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=239&Itemid=89&year=2011&month=09&day=17&title=dogs4dystonia-dog-walk-for-awareness-ri&uid=a547c39c7563998d3e734cfad334af4e&catids=38
26. http://www.rsvpbook.com/event.php?455233
27. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=202&Itemid=89&year=2011&month=10&day=01&title=billy-mclauglin-concert&uid=d934fcbbb8a8331b1babeb8f45d9a975
28. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=250&Itemid=89&year=2011&month=10&day=01&title=dystance4dystonia-walk-for-dystonia-awarenessapple-valley-ca&uid=55ba3d3d4a2ce2ae0b87782fa9658e99
29. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=199&Itemid=89&year=2011&month=10&day=02&title=jennifer-thorne-maine-marathon&uid=e2e4420f2f10ea00eb54cb3b9b765798
30. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=251&Itemid=89&year=2011&month=10&day=02&title=dogs4dystoniaomaha-ne&uid=935630b7ee549a7c0f5fb276f9721970
31. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=252&Itemid=89&year=2011&month=10&day=03&title=5th-annual-dystonia-golf-and-tennis-classic&uid=ca973e1293f5cc0688a99098a6ddd10b
32. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=164&Itemid=89&year=2011&month=10&day=09&title=bank-of-america-chicago-marathon-2011&uid=d3d3cace7935275bebc1ad13df9ccdf8&catids=37
33. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=246&Itemid=89&year=2011&month=10&day=09&title=6th-annual-dogs4dystonia-central-jersey-dystonia-support-a-action-group&uid=d13232294749b59a700585155de3d175&catids=38
34. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=265&Itemid=89&year=2011&month=10&day=15&title=community-education-meeting-ann-arbor-mi&uid=67edb5e56d79b544789c68308d586052
35. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=257&Itemid=89&year=2011&month=10&day=16&title=dystance4dystonianike-womens-marathon&uid=6c4137b095bb4cdee55245991c9fd691&catids=37
36. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=253&Itemid=89&year=2011&month=10&day=16&title=dystance4dystonia-santa-clarita-ca&uid=c3715a858215ab7a3f562167a2334470&catids=37
37. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=247&Itemid=89&year=2011&month=10&day=20&title=5th-international-dystonia-symposium&uid=7d70775a39a99b863e8ce47a6c359edc
38. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=254&Itemid=89&year=2011&month=10&day=27&title=18th-annual-tricky-tray-and-dinnerwoodland-park-nj&uid=9d366dbb90458f0e6a63b329d5205fe1
39. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=256&Itemid=89&year=2011&month=10&day=28&title=pleasant-grove-terrorrichmond-va&uid=cb8a02414fab5d79eb7f29769d2c5574
40. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=266&Itemid=89&year=2011&month=10&day=28&title=ne-regional-meeting&uid=9e09c96adde4ded12d371ba0455baa3e
41. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=266&Itemid=89&year=2011&month=10&day=28&title=ne-regional-meeting&uid=9e09c96adde4ded12d371ba0455baa3e
42. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=255&Itemid=89&year=2011&month=10&day=30&title=dogs4dystoniaforth-worth-tx&uid=04b99dece8bc982cd0f252c88bf32c24
43. mailto:treed@dystonia-foundation.org?subject=Dystance4Dystonia%20Program%20Information
44. mailto:enewsletter@dystonia-foundation.org?subject=Thoughts%20about%20eNews
45. http://dmrfenews.blogspot.com/
46. http://www.myspace.com/thedmrf
47. http://www.youtube.com/user/cemiwire
48. http://www.facebook.com/pages/Dystonia-Medical-Research-Foundation/46820882711
49. http://twitter.com/dmrf
50. http://thedmrf.ning.com/
51. http://dystance4dystonia.org/joomla/index.php?option=com_content&view=article&id=47&Itemid=55
52. http://dystance4dystonia.org/joomla/index.php?option=com_content&view=article&id=46&Itemid=54
53. https://amex.justgive.org/nonprofits/donate.jsp?ein=95-3378526
54. http://www.dystonia-foundation.org/pages/combined_federal_campaign/595.php
55. https://secure.cmax.americanexpress.com/Internet/US/Travel/CTN/Components/CTN_ECOMM_TSO_SERVICE_OFFERED/Terms%20and%20Conditions_112443.html

DMRF eNews - July 2011

DMRF eNews

July 2011


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

Dee Linde's Testimony

Dee Linde, a Dystonia Medical Research Foundation (DMRF) and Benign Essential
Blepharospasm Research Foundation (BEBRF) volunteer and a former Navy petty
officer, provided testimony before the Senate Defense Appropriations
Subcommittee to ask for their support. Dee provided dystonia information to the
Subcommittee members - appealing to them to help us learn more about dystonia
so that we might be able to reduce or even eliminate the suffering of returning
military personnel who might be at risk for developing dystonia because of a
traumatic brain injury.

Many thanks to Dee for sharing her personal story with the Senators present and
to everyone else.

Don't Miss the Children and Family Dystonia Symposium - Register Today!

6th John H. Menkes Children & Family Dystonia Symposium

August 19-21, 2011 at the Holiday Inn Mart Plaza, Chicago, IL.

Individuals and families come together to learn about dystonia diagnosis,
treatment and research, interact with experts, and find support from one
another. There will be special sessions for children ages 6-12, teens,
siblings, parents of affected children, and dystonia-affected adults/parents.

[2]CLICK HERE for more information and to learn how to register.

Volunteers with Cervical Dystonia Needed for Study

Allergan, Inc. is seeking volunteers who are or will be receiving Botox®
(onabotulinumtoxinA) injections for the treatment of cervical dystonia for
potential participation in an observational study. Eligible patients may
receive a patient stipend for their participation.

The CD-PROBE Study is a multi-center registry of cervical dystonia and therapy
with botulinum toxin type A (onabotulinumtoxinA).

For more information and to locate participating physicians in your area please
contact the CD-PROBE Study at [3]cdprobe@mednetstudy.com or 866-258-2737.

DMRF and the Movement Disorder Society

The Dystonia Medical Research Foundation (DMRF) is honored to be featured in
the June/July edition of the Movement Disorder Society website.

Check out the following articles to find out how the DMRF helps patients and
physicians, how we are working to train the next generation of Movement
Disorder Specialist, and to get a sneak peek at the upcoming 5th International
Dysotnia Symposium.

* [4]DMRF Provides Essential Services for Physicians and Patients Resources
Designed to Support Patient Care.
* [5]Training Tomorrow's Movement Disorder Superheroes - DMRF and Merz
Partner to Offer Clinical Movement DIsorders Fellowships with a Focus on
Dysotnia
* [6]5th International Dystonia Symposium - It's Not What You Think!

New DMRF Survey: How Do You Cope?

[7]Click here to participate.

"Faces of Dystonia" Celebrates You!

When a person is diagnosed with dystonia, the whole family is affected. Every
family member experiences dystonia in their own way.

Meet Scott, whose symptoms started in 1992 but was just diagnosed with Cervical
dystonia in 2009. If you would like to read more about Scott visit us at
[8]Faces of Dystonia

Spouses, parents, children, and siblings are all invited to share their stories
as part of "Faces of Dystonia."

Share your story here! [9]http://www.dystonia-foundation.org/faces

Upcoming Support Group Meetings

7/16 - [10]Dystonia Support/Advocacy Group (San Diego, CA)

7/16 - [11]Colorado Dystonia/Blepharospasm Group (Englewood, CO)

7/23 - [12]Quad-City Dystonia Support Group (Eldridge, IA)

8/10 - [13]The Phoenix Arizona Dystonia SG (Phoenix, AZ)

8/13 - [14]North Bay Dystonia SG Meeting (Santa Rosa, CA)

9/27 - [15]University of Miami South Florida Dystonia (N Miami, FL)

Coming Soon...

8/19 - [16]Children & Family Dystonia Symposium (Chicago, IL)

8/19 - [17]3rd Annual MN Dystonia Golf Classic (Cannon Falls, MN)

9/17 -[18] [19]Dewey Beach Sprint Triathlon -Pat Brogan (Dewey Beach, DE)

9/17 - [20]Dogs4Dystonia Dog Walk for Awareness (East Greenwich, RI)

9/24 -[21] 2nd Annual Alabama Dystance4Dystonia Run (Dothan, AL)

For more information on the Dystance4Dystonia program, please email Tammy at
[22]treed@dystonia-foundation.org or

give her a call at 312-447-5098 today.

Tell us how we are doing. We would love to hear your thoughts about the
newsletter. Email us today at[23] enewsletter@dystonia-foundation.org

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

Would you like to receive updates by text message?

Text DYSTONIA to 90999

Join us on one of our social networks:

[25][jpeg] [26][jpeg] [27][jpeg]

[28][jpeg] [29][jpeg]

In This Issue

Testimony

Children & Family Symposium

Volunteers Needed

DMRF featured on MDS website

DMRF Survey

Faces of Dystonia

Upcoming Support Group Mtgs

Coming Soon

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

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

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

* Please see Terms & Conditions below

[33]Are you a federal government or military employee looking to support the
work of the DMRF?

Dystonia Medical Research Foundation One East Wacker Drive, Suite 2810,
Chicago, IL 60601-1905

Phone (312) 755-0198 Toll Free (800) 377-3978 Fax (312) 803-0138

Web www.dystonia-foundation.org Email dystonia@dystonia-foundation.org

* Terms and Conditions for the Membership Rewards program apply. Visit
[34]membershiprewards.com/terms for more information.

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

References

1. mailto:enewsletter@dystonia-foundation.org
2. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=147&Itemid=89&year=2011&month=08&day=19&title=6th-john-h-menkes-children-a-family-dystonia-symposium&uid=8c2ce47afdc141a8f8ae81e238afa412
3. mailto:cdprobe@mednetstudy.com?subject=CD-Probe%20Study
4. http://www.movementdisorders.org/monthly_edition/2011/06/dmrf.php
5. http://www.movementdisorders.org/monthly_edition/2011/06/fellowship.php
6. http://www.movementdisorders.org/monthly_edition/2011/06/symposium.php
7. https://www.surveymonkey.com/s/howdoyoucope
8. http://www.dystonia-foundation.org/pages/faces_of_dystonia/620.php
9. http://www.dystonia-foundation.org/pages/faces/611.php
10. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=231&Itemid=89&year=2011&month=07&day=16&title=dystonia-support-a-advocacy-group-of-san-diego-county&uid=effc493dea0021cb0b353609e99f14e9
11. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=245&Itemid=89&year=2011&month=07&day=16&title=colorado-dystonia-and-blepharospasm-group-meeting&uid=ab6b4d32bf2dc3ee5eee050af603e143
12. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=215&Itemid=89&year=2011&month=07&day=23&title=quad-city-dystonia-support-group&uid=d21c08afb42baa375221956851da6e3c
13. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=232&Itemid=89&year=2011&month=08&day=10&title=the-phoenix-arizona-dystonia-support-group&uid=a27f75d826969e65d8ba67f475b111b7
14. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=157&Itemid=89&year=2011&month=08&day=13&title=north-bay-dystonia-sg-meeting&uid=34fead075feda77c759f4f1df2925fde
15. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=242&Itemid=89&year=2011&month=09&day=27&title=the-university-of-miami-south-florida-dystonia-support-group&uid=49ae94fb4e127642e33ab2b109263e3c
16. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=147&Itemid=89&year=2011&month=08&day=19&title=6th-john-h-menkes-children-a-family-dystonia-symposium&uid=8c2ce47afdc141a8f8ae81e238afa412
17. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=238&Itemid=89&year=2011&month=08&day=19&title=3rd-annual-minnesota-dystonia-golf-classic&uid=30bdd7c5b7262a9929c22ae4cde0aa2e
18. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=191&Itemid=89&year=2011&month=09&day=17&title=pat-brogan-dewey-beach-sprint-triathlon&uid=eab6c45e747cd9b5992f79ac14c08667&catids=37
19. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=191&Itemid=89&year=2011&month=09&day=17&title=pat-brogan-dewey-beach-sprint-triathlon&uid=eab6c45e747cd9b5992f79ac14c08667&catids=37
20. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=239&Itemid=89&year=2011&month=09&day=17&title=dogs4dystonia-dog-walk-for-awareness-ri&uid=a547c39c7563998d3e734cfad334af4e&catids=38
21. http://www.rsvpbook.com/event.php?455233
22. mailto:treed@dystonia-foundation.org?subject=Dystance4Dystonia%20Program%20Information
23. mailto:enewsletter@dystonia-foundation.org?subject=Thoughts%20about%20eNews
24. http://dmrfenews.blogspot.com/
25. http://www.myspace.com/thedmrf
26. http://www.youtube.com/user/cemiwire
27. http://www.facebook.com/pages/Dystonia-Medical-Research-Foundation/46820882711
28. http://twitter.com/dmrf
29. http://thedmrf.ning.com/
30. http://dystance4dystonia.org/joomla/index.php?option=com_content&view=article&id=47&Itemid=55
31. http://dystance4dystonia.org/joomla/index.php?option=com_content&view=article&id=46&Itemid=54
32. https://amex.justgive.org/nonprofits/donate.jsp?ein=95-3378526
33. http://www.dystonia-foundation.org/pages/combined_federal_campaign/595.php
34. https://secure.cmax.americanexpress.com/Internet/US/Travel/CTN/Components/CTN_ECOMM_TSO_SERVICE_OFFERED/Terms%20and%20Conditions_112443.html

DMRF eNews - June 2011

DMRF eNews

June 2011


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

DMRF and the Movement Disorder Society

The Dystonia Medical Research Foundation (DMRF) is honored to be featured in
the June/July edition of the Movement Disorder Society website.

Check out the following articles to find out how the DMRF helps patients and
physicians, how we are working to train the next generation of Movement
Disorder Specialists, and to get a sneak peek at the upcoming 5th International
Dystonia Symposium.

* [2]DMRF Provides Essential Services for Physicians and Patients Resources
Designed to Support Patient Care
* [3]Training Tomorrow's Movement Disorder Superheroes - DMRF and Merz
Partner to Offer Clinical Movement Disorders Fellowships with a Focus on
Dystonia
* [4]5th International Dystonia Symposium - It's Not What You Think!

Design the Coolest Bag Ever!

Submissions needed to design official bag of the

6th John H. Menkes Children & Family Dystonia Symposium.

Enter our design-a-bag contest and get the chance to create a re-usable bag for
use by attendees of the Children & Family Dystonia Symposium (Aug 19-21, 2011 -
Chicago).

For details, go to [5]http://www.dystonia-foundation.org/bag

YOU'RE INVITED TO ATTEND THE

6TH John H. Menkes Children & Family Dystonia Symposium

August 19-21, 2011 at the Holiday Inn Mart Plaza, Chicago, IL.

The purpose of the symposium is to bring individuals and families together to
learn about dystonia and the DMRF, interact with experts, and find support from
one another. There will be special sessions for children ages 6-12, teens,
siblings, parents of affected children, and dystonia-affected adults/parents.

[6]CLICK HERE for more information and to learn how to register.

Dystonia Awareness Week

DMRF encourages everyone in the dystonia community to help educate the public
about this disorder during Dystonia Awareness Week, June 5-11, 2011.

* Share information about dystonia with others by passing out trifold cards
(to request the trifold cards, email [7]dystonia@dystonia-foundation.org).
* Talk with one person a day, sharing your experience with dystonia.
* Join us on June 7th for Dystonia Twitter Awareness Day

Every effort makes a difference! So let's spread the word to raise awareness.

Dystonia Twitter Awareness Day

Join the DMRF and others interested in making a difference in the dystonia
community. Tell your friends, followers and family about this wonderful
opportunity to raise awareness and educate others about dystonia.

Get started now - sign up for a Twitter account at [8]http://twitter.com

Already have a Twitter account? Follow us at [9]@dmrf today!

Need a little more info? [10]CLICK HERE.

Get ready, get set - and Tweet away on Dystonia Twitter Awareness Day!

Check out Billy McLaughlin on the early show

DMRF Awareness Ambassador Billy McLaughlin appeared on The Early Show to
discuss his journey with dystonia.

[11]Click here to see the clip of his interview and hear more about his
inspiring story.

"Faces of Dystonia" is for Families

When a person is diagnosed with dystonia, the whole family is affected. Every
family member experiences dystonia in their own way. Spouses, parents,
children, and siblings are all invited to share their stories as part of "Faces
of Dystonia."

Share your story here! [12]http://www.dystonia-foundation.org/faces

To view "Faces of Dystonia" [13]CLICK HERE.

Upcoming Support Group Meetings

6/04 - [14]Los Angeles Dystonia (Los Angeles, CA)

6/11 - [15]Greater Dallas Dystonia/Dysphonia (Dallas, TX)

6/11- [16]Southwest Region of Florida (Tampa, FL )

6/28 -[17] University of Miami South Florida Dystonia (N Miami, FL)

7/23 - [18]Quad-City Dystonia (Eldridge, IA)

7/26 -[19] Univ of Miami SF-Broward/Palm Beach (Deerfield Beach, FL)

8/10 - [20]The Phoenix Arizona Dystonia (Phoenix, AZ)

8/13 - [21]North Bay Dystonia (Santa Rosa, CA)

Coming Soon...

6/05 - [22]Walk for Dystonia Awareness/Florence, MA

For more information on the Dystance4Dystonia program, please email Tammy at
[23]treed@dystonia-foundation.org or

give her a call at 312-447-5098 today.

Tell us how we are doing. We would love to hear your thoughts about the
newsletter. Email us today at[24] enewsletter@dystonia-foundation.org

Would you like to access the newsletter 24/7? [25]dmrfenews.blogspot.com

Would you like to receive updates by text message?

Text DYSTONIA to 90999

Join us on one of our social networks:

[26][jpeg] [27][jpeg] [28][jpeg]

[29][jpeg] [30][jpeg]

In This Issue

DMRF featured on MDS website

Design the Coolest Bag Ever

Children & Family Symposium

Dystonia Awareness Week

Twitter Awareness Day

Billy on The Early Show

Faces of Dystonia

Upcoming Support Group Mtgs

Coming Soon

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

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

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

* Please see Terms & Conditions below

[34]Are you a federal government or military employee looking to support the
work of the DMRF?

Dystonia Medical Research Foundation One East Wacker Drive, Suite 2810,
Chicago, IL 60601-1905

Phone (312) 755-0198 Toll Free (800) 377-3978 Fax (312) 803-0138

Web www.dystonia-foundation.org Email dystonia@dystonia-foundation.org

* Terms and Conditions for the Membership Rewards program apply. Visit
[35]membershiprewards.com/terms for more information.

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

References

1. mailto:enewsletter@dystonia-foundation.org
2. http://www.movementdisorders.org/monthly_edition/2011/06/dmrf.php
3. http://www.movementdisorders.org/monthly_edition/2011/06/fellowship.php
4. http://www.movementdisorders.org/monthly_edition/2011/06/symposium.php
5. http://www.dystonia-foundation.org/pages/bag_design_contest/629.php
6. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=147&Itemid=89&year=2011&month=08&day=19&title=6th-john-h-menkes-children-a-family-dystonia-symposium&uid=8c2ce47afdc141a8f8ae81e238afa412
7. mailto:dystonia@dystonia-foundation.org?subject=Requesting%20trifold%20cards%20for%20awareness%20week
8. http://twitter.com/
9. http://twitter.com/#%21/dmrf
10. http://www.dystonia-foundation.org/pages/create_a_trend__participate_in_dystonia_twitter_awareness_day/338.php
11. http://www.cbsnews.com/stories/2011/05/27/earlyshow/main20066772.shtml?tag=mncol;lst;1
12. http://www.dystonia-foundation.org/pages/faces/611.php
13. http://www.dystonia-foundation.org/pages/faces_of_dystonia/620.php
14. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=222&Itemid=89&year=2011&month=06&day=04&title=los-angeles-dystonia-support-group&uid=044429d13c58254d05ced864adbb772c
15. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=235&Itemid=89&year=2011&month=06&day=11&title=greater-dallas-dystoniadysphonia-support-group&uid=82f8f5d5d486217a8767464f13aa5c34
16. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=225&Itemid=89&year=2011&month=06&day=11&title=southwest-region-of-florida&uid=37b663d07011d0be799ab288bbc93474
17. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=226&Itemid=89&year=2011&month=06&day=28&title=the-university-of-miami-south-florida-dystonia-support-group&uid=c4e294b7b86946995deeccb4d22dca42
18. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=215&Itemid=89&year=2011&month=07&day=23&title=quad-city-dystonia-support-group&uid=d21c08afb42baa375221956851da6e3c
19. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=228&Itemid=89&year=2011&month=07&day=26&title=the-university-of-miami-south-florida-dystonia-support-group-mtg-browardpalm-beach-group&uid=5ab923a7a06fc53f1081328069a41d6c
20. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=232&Itemid=89&year=2011&month=08&day=10&title=the-phoenix-arizona-dystonia-support-group&uid=a27f75d826969e65d8ba67f475b111b7
21. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=157&Itemid=89&year=2011&month=08&day=13&title=north-bay-dystonia-sg-meeting&uid=34fead075feda77c759f4f1df2925fde
22. http://www.rsvpbook.com/event.php?476265
23. mailto:treed@dystonia-foundation.org?subject=Dystance4Dystonia%20Program%20Information
24. mailto:enewsletter@dystonia-foundation.org?subject=Thoughts%20about%20eNews
25. http://dmrfenews.blogspot.com/
26. http://www.myspace.com/thedmrf
27. http://www.youtube.com/user/cemiwire
28. http://www.facebook.com/pages/Dystonia-Medical-Research-Foundation/46820882711
29. http://twitter.com/dmrf
30. http://thedmrf.ning.com/
31. http://dystance4dystonia.org/joomla/index.php?option=com_content&view=article&id=47&Itemid=55
32. http://dystance4dystonia.org/joomla/index.php?option=com_content&view=article&id=46&Itemid=54
33. https://amex.justgive.org/nonprofits/donate.jsp?ein=95-3378526
34. http://www.dystonia-foundation.org/pages/combined_federal_campaign/595.php
35. https://secure.cmax.americanexpress.com/Internet/US/Travel/CTN/Components/CTN_ECOMM_TSO_SERVICE_OFFERED/Terms%20and%20Conditions_112443.html

Wednesday, July 6, 2011

DMRF eNews - June 2011

DMRF eNews

June 2011


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

DMRF and the Movement Disorder Society

The Dystonia Medical Research Foundation (DMRF) is honored to be featured in
the June/July edition of the Movement Disorder Society website.

Check out the following articles to find out how the DMRF helps patients and
physicians, how we are working to train the next generation of Movement
Disorder Specialists, and to get a sneak peek at the upcoming 5th International
Dystonia Symposium.

* [2]DMRF Provides Essential Services for Physicians and Patients Resources
Designed to Support Patient Care
* [3]Training Tomorrow's Movement Disorder Superheroes - DMRF and Merz
Partner to Offer Clinical Movement Disorders Fellowships with a Focus on
Dystonia
* [4]5th International Dystonia Symposium - It's Not What You Think!

Design the Coolest Bag Ever!

Submissions needed to design official bag of the

6th John H. Menkes Children & Family Dystonia Symposium.

Enter our design-a-bag contest and get the chance to create a re-usable bag for
use by attendees of the Children & Family Dystonia Symposium (Aug 19-21, 2011 -
Chicago).

For details, go to [5]http://www.dystonia-foundation.org/bag

YOU'RE INVITED TO ATTEND THE

6TH John H. Menkes Children & Family Dystonia Symposium


August 19-21, 2011 at the Holiday Inn Mart Plaza, Chicago, IL.

The purpose of the symposium is to bring individuals and families together to
learn about dystonia and the DMRF, interact with experts, and find support from
one another. There will be special sessions for children ages 6-12, teens,
siblings, parents of affected children, and dystonia-affected adults/parents.

[6]CLICK HERE for more information and to learn how to register.

Dystonia Awareness Week

DMRF encourages everyone in the dystonia community to help educate the public
about this disorder during Dystonia Awareness Week, June 5-11, 2011.

* Share information about dystonia with others by passing out trifold cards
(to request the trifold cards, email [7]dystonia@dystonia-foundation.org).
* Talk with one person a day, sharing your experience with dystonia.
* Join us on June 7th for Dystonia Twitter Awareness Day

Every effort makes a difference! So let's spread the word to raise awareness.

Dystonia Twitter Awareness Day

Join the DMRF and others interested in making a difference in the dystonia
community. Tell your friends, followers and family about this wonderful
opportunity to raise awareness and educate others about dystonia.

Get started now - sign up for a Twitter account at [8]http://twitter.com

Already have a Twitter account? Follow us at [9]@dmrf today!

Need a little more info? [10]CLICK HERE.

Get ready, get set - and Tweet away on Dystonia Twitter Awareness Day!

Check out Billy McLaughlin on the early show

DMRF Awareness Ambassador Billy McLaughlin appeared on The Early Show to
discuss his journey with dystonia.

[11]Click here to see the clip of his interview and hear more about his
inspiring story.

"Faces of Dystonia" is for Families

When a person is diagnosed with dystonia, the whole family is affected. Every
family member experiences dystonia in their own way. Spouses, parents,
children, and siblings are all invited to share their stories as part of "Faces
of Dystonia."

Share your story here! [12]http://www.dystonia-foundation.org/faces

To view "Faces of Dystonia" [13]CLICK HERE.

Upcoming Support Group Meetings

6/04 - [14]Los Angeles Dystonia (Los Angeles, CA)

6/11 - [15]Greater Dallas Dystonia/Dysphonia (Dallas, TX)

6/11- [16]Southwest Region of Florida (Tampa, FL )

6/28 -[17] University of Miami South Florida Dystonia (N Miami, FL)

7/23 - [18]Quad-City Dystonia (Eldridge, IA)

7/26 -[19] Univ of Miami SF-Broward/Palm Beach (Deerfield Beach, FL)

8/10 - [20]The Phoenix Arizona Dystonia (Phoenix, AZ)

8/13 - [21]North Bay Dystonia (Santa Rosa, CA)

Coming Soon...

6/05 - [22]Walk for Dystonia Awareness/Florence, MA

For more information on the Dystance4Dystonia program, please email Tammy at
[23]treed@dystonia-foundation.org or

give her a call at 312-447-5098 today.

Tell us how we are doing. We would love to hear your thoughts about the
newsletter. Email us today at[24] enewsletter@dystonia-foundation.org

Would you like to access the newsletter 24/7? [25]dmrfenews.blogspot.com

Would you like to receive updates by text message?

Text DYSTONIA to 90999

Join us on one of our social networks:

[26][jpeg] [27][jpeg] [28][jpeg]

[29][jpeg] [30][jpeg]

In This Issue

DMRF featured on MDS website

Design the Coolest Bag Ever

Children & Family Symposium

Dystonia Awareness Week

Twitter Awareness Day

Billy on The Early Show

Faces of Dystonia

Upcoming Support Group Mtgs

Coming Soon

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

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

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

* Please see Terms & Conditions below

[34]Are you a federal government or military employee looking to support the
work of the DMRF?

Dystonia Medical Research Foundation One East Wacker Drive, Suite 2810,
Chicago, IL 60601-1905

Phone (312) 755-0198 Toll Free (800) 377-3978 Fax (312) 803-0138

Web www.dystonia-foundation.org Email dystonia@dystonia-foundation.org

* Terms and Conditions for the Membership Rewards program apply. Visit
[35]membershiprewards.com/terms for more information.

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

References

1. mailto:enewsletter@dystonia-foundation.org
2. http://www.movementdisorders.org/monthly_edition/2011/06/dmrf.php
3. http://www.movementdisorders.org/monthly_edition/2011/06/fellowship.php
4. http://www.movementdisorders.org/monthly_edition/2011/06/symposium.php
5. http://www.dystonia-foundation.org/pages/bag_design_contest/629.php
6. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=147&Itemid=89&year=2011&month=08&day=19&title=6th-john-h-menkes-children-a-family-dystonia-symposium&uid=8c2ce47afdc141a8f8ae81e238afa412
7. mailto:dystonia@dystonia-foundation.org?subject=Requesting%20trifold%20cards%20for%20awareness%20week
8. http://twitter.com/
9. http://twitter.com/#%21/dmrf
10. http://www.dystonia-foundation.org/pages/create_a_trend__participate_in_dystonia_twitter_awareness_day/338.php
11. http://www.cbsnews.com/stories/2011/05/27/earlyshow/main20066772.shtml?tag=mncol;lst;1
12. http://www.dystonia-foundation.org/pages/faces/611.php
13. http://www.dystonia-foundation.org/pages/faces_of_dystonia/620.php
14. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=222&Itemid=89&year=2011&month=06&day=04&title=los-angeles-dystonia-support-group&uid=044429d13c58254d05ced864adbb772c
15. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=235&Itemid=89&year=2011&month=06&day=11&title=greater-dallas-dystoniadysphonia-support-group&uid=82f8f5d5d486217a8767464f13aa5c34
16. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=225&Itemid=89&year=2011&month=06&day=11&title=southwest-region-of-florida&uid=37b663d07011d0be799ab288bbc93474
17. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=226&Itemid=89&year=2011&month=06&day=28&title=the-university-of-miami-south-florida-dystonia-support-group&uid=c4e294b7b86946995deeccb4d22dca42
18. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=215&Itemid=89&year=2011&month=07&day=23&title=quad-city-dystonia-support-group&uid=d21c08afb42baa375221956851da6e3c
19. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=228&Itemid=89&year=2011&month=07&day=26&title=the-university-of-miami-south-florida-dystonia-support-group-mtg-browardpalm-beach-group&uid=5ab923a7a06fc53f1081328069a41d6c
20. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=232&Itemid=89&year=2011&month=08&day=10&title=the-phoenix-arizona-dystonia-support-group&uid=a27f75d826969e65d8ba67f475b111b7
21. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=157&Itemid=89&year=2011&month=08&day=13&title=north-bay-dystonia-sg-meeting&uid=34fead075feda77c759f4f1df2925fde
22. http://www.rsvpbook.com/event.php?476265
23. mailto:treed@dystonia-foundation.org?subject=Dystance4Dystonia%20Program%20Information
24. mailto:enewsletter@dystonia-foundation.org?subject=Thoughts%20about%20eNews
25. http://dmrfenews.blogspot.com/
26. http://www.myspace.com/thedmrf
27. http://www.youtube.com/user/cemiwire
28. http://www.facebook.com/pages/Dystonia-Medical-Research-Foundation/46820882711
29. http://twitter.com/dmrf
30. http://thedmrf.ning.com/
31. http://dystance4dystonia.org/joomla/index.php?option=com_content&view=article&id=47&Itemid=55
32. http://dystance4dystonia.org/joomla/index.php?option=com_content&view=article&id=46&Itemid=54
33. https://amex.justgive.org/nonprofits/donate.jsp?ein=95-3378526
34. http://www.dystonia-foundation.org/pages/combined_federal_campaign/595.php
35. https://secure.cmax.americanexpress.com/Internet/US/Travel/CTN/Components/CTN_ECOMM_TSO_SERVICE_OFFERED/Terms%20and%20Conditions_112443.html

Monday, June 6, 2011

DMRF eNews - May 2011

DMRF eNews

May 2011

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

Registration is open for the Children & Family Dystonia Symposium

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

The purpose of the symposium is to bring individuals and families together to
learn about dystonia and the DMRF, interact with experts, and find support
among one another. There will be special sessions for children ages 6-12,
teens, siblings, parents of affected children, and dystonia-affected
adults/parents.

[2]Click here to learn more information and to register.

Dystonia Research Funding

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

Advocacy Day Update

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

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

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

Have you become a face yet?

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

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

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

Thank you for your participation.

Go the Dystance 4 Dystonia!

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

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

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

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

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

Monthly Donor Program

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

Upcoming Support Group Meetings

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

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

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

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

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

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

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

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

Coming Soon...

Dystonia Awareness Week - June 5-11, 2011

Twitter Awareness Day - Tuesday, June 7, 2011

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

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

Would you like to receive updates by text message?

Text DYSTONIA to 90999

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

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

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

* Please see Terms & Conditions below

[31]Are you a federal government or military employee looking to support the
work of the DMRF?

Dystonia Medical Research Foundation One East Wacker Drive, Suite 2810,
Chicago, IL 60601-1905

Phone (312) 755-0198 Toll Free (800) 377-3978 Fax (312) 803-0138

Web www.dystonia-foundation.org Email dystonia@dystonia-foundation.org

* Terms and Conditions for the Membership Rewards program apply. Visit
[32]membershiprewards.com/terms for more information.

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

References

1. mailto:enewsletter@dystonia-foundation.org
2. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=147&Itemid=89&year=2011&month=08&day=19&title=6th-john-h-menkes-children-a-family-dystonia-symposium&uid=8c2ce47afdc141a8f8ae81e238afa412
3. http://www.dystonia-foundation.org/pages/dystonia_included_in_dept_of_defense_s_research_program/626.php
4. http://dystonia-advocacy.org/
5. http://www.dystonia-foundation.org/pages/faces_of_dystonia/620.php
6. http://www.dystonia-foundation.org/pages/faces_of_dystonia/611.php
7. mailto:treed@dystonia-foundation.org?subject=Dystance4Dystonia
8. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=208&Itemid=89&year=2011&month=05&day=21&title=dogs4dystonia-dog-walk-reston-va&uid=216fdf93ceb26b7ba867b0a06ee59439&catids=38
9. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=211&Itemid=89&year=2011&month=06&day=05&title=dystance4dystonia-walk-for-dystonia-awarenessflorence-ma&uid=547f701de078d176119ca140063f0301&catids=37
10. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=167&Itemid=89&year=2011&month=06&day=05&title=san-diego-marathon&uid=4d2198a9f021376d8fc70453dccf350b&catids=37
11. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&view=cat&task=cat.listevents&Itemid=89
12. mailto:dystonia@dystonia-foundation.org?subject=Monthly%20Giving%20Plan
13. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=156&Itemid=89&year=2011&month=05&day=21&title=north-bay-dystonia-sg-meeting&uid=7521020e6a567162de21e822baeedc9e
14. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=220&Itemid=89&year=2011&month=05&day=21&title=arkansas-dystonia-sg-meeting&uid=93b091bc928195bc0348981a2ea71369
15. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=219&Itemid=89&year=2011&month=05&day=21&title=new-mexico-dystonia-sg-meeting&uid=86575f011452d65fecc48f472b2c6956
16. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=207&Itemid=89&year=2011&month=05&day=21&title=dystonia-support-a-advocacy-group-of-san-diego-county&uid=271bd0cac644525b4a052d957e9b8089
17. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=222&Itemid=89&year=2011&month=06&day=04&title=los-angeles-dystonia-support-group&uid=044429d13c58254d05ced864adbb772c
18. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=225&Itemid=89&year=2011&month=06&day=11&title=southwest-region-of-florida&uid=37b663d07011d0be799ab288bbc93474
19. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=215&Itemid=89&year=2011&month=07&day=23&title=quad-city-dystonia-support-group&uid=d21c08afb42baa375221956851da6e3c
20. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=157&Itemid=89&year=2011&month=08&day=13&title=north-bay-dystonia-sg-meeting&uid=34fead075feda77c759f4f1df2925fde
21. mailto:enewsletter@dystonia-foundation.org?subject=Thoughts%20about%20eNews
22. http://dmrfenews.blogspot.com/
23. http://www.myspace.com/thedmrf
24. http://www.youtube.com/user/cemiwire
25. http://www.facebook.com/pages/Dystonia-Medical-Research-Foundation/46820882711
26. http://twitter.com/dmrf
27. http://thedmrf.ning.com/
28. http://dystance4dystonia.org/joomla/index.php?option=com_content&view=article&id=47&Itemid=55
29. http://dystance4dystonia.org/joomla/index.php?option=com_content&view=article&id=46&Itemid=54
30. https://amex.justgive.org/nonprofits/donate.jsp?ein=95-3378526
31. http://www.dystonia-foundation.org/pages/combined_federal_campaign/595.php
32. https://secure.cmax.americanexpress.com/Internet/US/Travel/CTN/Components/CTN_ECOMM_TSO_SERVICE_OFFERED/Terms%20and%20Conditions_112443.html

DMRF eNews - April 2011

DMRF eNews

April 2011

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

News You Can Use

The Center for Medicare and Medicaid Services (CMS) has granted a unique
billing code for the recently approved botulinum toxin, Xeomin® . This took
effect on April 1st and will make it easier for physicians to bill and be
reimbursed for this FDA approved treatment for dystonia. It is important for
doctors and patients to have access to all medications approved to treat
dystonia. Congratulations to the dystonia advocates who met with CMS officials
to help them understand the importance of issuing this temporary code, giving
access to this treatment for the dystonia community.

For more detail information,[2] click here.

New Dystonia Support Group

The University of Miami South Florida Dystonia Support Group will host its
first support group meeting on Tuesday, April 26th, at the

St. Catherine's Rehabilitation Hospital & Villa Maria Nursing Center. This
support group is for patients with dystonia and their caregivers. If you would
like more information or would like to attend, please [3]click here.

Dystonia Educational Forum

The Dystonia Medical Research Foundation (DMRF) would like to invite you to
join us in Seattle, WA on Friday, April 29th for this special meeting where you
will be presented with the latest developments on living with dystonia. Topics
will include an overview of dystonia, current treatments, Deep Brain
Stimulation and exercise.

We are pleased to invite you to this meeting at no charge with lunch included.
Registration is required. For more details and to register, [4]click here.

Dystonia Advocacy Day

The Dystonia Medical Research Foundation, a member of the Dystonia Advocacy
Network (DAN), is pleased to announce 2011 Capitol Hill Advocacy Day will be
held on Tuesday, May 10th and Wednesday, May 11th at the Embassy Suites DC
Convention Center in Washington, DC. This annual event brings dystonia
advocates from across the country together to work in support of a legislative
agenda that focuses on bolstering dystonia research and improving patient care.

If you would like additional information about this event, please contact
DMRF's Grassroots Coordinator, Dane Christiansen, at
[5]dchristiansen@dystonia-foundation.org

Save the Date!

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

The purpose of the symposium is to bring individuals and families together to
learn about dystonia and the DMRF, interact with experts, and find support
among one another. There will be special sessions for children under 13, teens,
siblings, parents of affected children, and dystonia-affected adults/parents.

Look for registration information at [6]www.dystonia-foundation.org in the
coming weeks.

How Did You Overcome Misdiagnosis?

Go to [7]https://www.surveymonkey.com/s/diagnosis and share your experience.

Faces of Dystonia

Submissions for the Faces of Dystonia continue to roll in and soon we will
share them with you. The DMRF celebrates members of the dystonia comunity and
invites everyone to participate in this special project. [8]Click here to find
out more information about the Faces of Dystonia. Want to be a Face of
Dystonia? Don't wait, submit your story today.

Events taking place soon...

The DMRF is fortunate to have dedicated and creative volunteers around the
country who work hard to promote dystonia awareness and raise funds for
research. The following are some of the events coming to you soon.

4/15 [9]Return to Margaritaville - Danvers, MA (Paula Gates)

4/30 [10]Leona Divide 50 Mile - Lake Hughes, CA (Krista Richter)

5/14-15 Nathan Calvert Yard Sale - NJ (Sandra Calvert Nathans)

5/15 [11] Dystance4Dystonia Walk - Apple Valley, CA (Terry Kafides)

5/21 [12]Dogs4Dystonia Dog Walk - Reston, VA (Hunter Webster)

6/05 [13]Dystance4Dystonia Walk - Florence, MA (Becky Cortis)

If you are interested in joining any of our two programs, Dystance4Dystonia or
Dogs4Dystonia, please email Tammy Reed at [14]treed@dystonia-foundation.org.

Upcoming Support Group Meetings

4/16 - [15]Baltimore/John Hopkins Dystonia (ME)

4/23 - [16]Tampa Bay Dystonia (FL)

4/26 - [17]The University of Miami South Florida Dystonia (FL)

4/28 - [18]Dystonia Support Group of Spokane (WA)

5/15 -[19] Portland & SW Washington (OR)

5/21 - [20]North Bay Dystonia (CA)

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

Tell us how we are doing. We would love to hear your thoughts about the
newsletter. Email us today at[22] enewsletter@dystonia-foundation.org

Would you like to access the newsletter 24/7? [23]dmrfenews.blogspot.com

Would you like to receive updates by text message?

Text DYSTONIA to 90999


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

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

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

* Please see Terms & Conditions below

[32]Are you a federal government or military employee looking to support the
work of the DMRF?

Dystonia Medical Research Foundation One East Wacker Drive, Suite 2810,
Chicago, IL 60601-1905

Phone (312) 755-0198 Toll Free (800) 377-3978 Fax (312) 803-0138

Web www.dystonia-foundation.org Email dystonia@dystonia-foundation.org

* Terms and Conditions for the Membership Rewards program apply. Visit
[33]membershiprewards.com/terms for more information.

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

References

1. mailto:enewsletter@dystonia-foundation.org
2. http://www.dystonia-foundation.org/pages/merz_announces_new_centers_for_medicare_and_medicaid_billing_q_code_for_xeomin_/622.php
3. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=201&Itemid=89&year=2011&month=04&day=26&title=the-university-of-miami-south-florida-dystonia-support-group&uid=f77ffe00b73db7e88f95a140e725e388
4. http://www.dmrfevents.org/event.php?439945
5. mailto:dchristiansen@dystonia-foundation.org?subject=Advocacy%20Day
6. http://www.dystonia-foundation.org/
7. https://www.surveymonkey.com/s/diagnosis
8. http://www.dystonia-foundation.org/pages/faces/611.php
9. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=179&Itemid=89&year=2011&month=04&day=15&title=return-to-margaritaville&uid=cebbb5b12ea9d09a26346f15664fff6e
10. http://www.dmrfevents.org/event.php?444798
11. http://www.rsvpbook.com/event.php?435597
12. http://www.rsvpbook.com/event.php?492995
13. http://www.rsvpbook.com/event.php?476265
14. mailto:treed@dystonia-foundation.org?subject=Dystance4Dystonia%2FDogs4Dystonia
15. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=203&Itemid=89&year=2011&month=04&day=16&title=baltimorejohn-hopkins-dystonia-sg-meeting&uid=1607a77d37824cb41864643a47585fa0
16. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=183&Itemid=89&year=2011&month=04&day=23&title=tampa-bay-dystonia-sg-meeting&uid=51cc25cb3545b4bc2aad28a3ba960d0c
17. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=201&Itemid=89&year=2011&month=04&day=26&title=the-university-of-miami-south-florida-dystonia-support-group&uid=f77ffe00b73db7e88f95a140e725e388
18. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=206&Itemid=89&year=2011&month=04&day=28&title=dystonia-support-group-of-spokane&uid=da42eb32b5c12566a95eb4c5e89043b4
19. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=189&Itemid=89&year=2011&month=05&day=15&title=portland-a-sw-washington-dystonia-sg-meeting&uid=160c6ab0075e719ffdc867c726a5fff2
20. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=156&Itemid=89&year=2011&month=05&day=21&title=north-bay-dystonia-sg-meeting&uid=7521020e6a567162de21e822baeedc9e
21. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=207&Itemid=89&year=2011&month=05&day=21&title=dystonia-support-a-advocacy-group-of-san-diego-county&uid=271bd0cac644525b4a052d957e9b8089
22. mailto:enewsletter@dystonia-foundation.org?subject=Thoughts%20about%20eNews
23. http://dmrfenews.blogspot.com/
24. http://www.myspace.com/thedmrf
25. http://www.youtube.com/user/cemiwire
26. http://www.facebook.com/pages/Dystonia-Medical-Research-Foundation/46820882711
27. http://twitter.com/dmrf
28. http://thedmrf.ning.com/
29. http://dystance4dystonia.org/joomla/index.php?option=com_content&view=article&id=47&Itemid=55
30. http://dystance4dystonia.org/joomla/index.php?option=com_content&view=article&id=46&Itemid=54
31. https://amex.justgive.org/nonprofits/donate.jsp?ein=95-3378526
32. http://www.dystonia-foundation.org/pages/combined_federal_campaign/595.php
33. https://secure.cmax.americanexpress.com/Internet/US/Travel/CTN/Components/CTN_ECOMM_TSO_SERVICE_OFFERED/Terms%20and%20Conditions_112443.html

DMRF eNews - March 2011

DMRF eNews

March 2011

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

Join us for the 2011 Dystonia Advocacy Day

The Dystonia Medical Research Foundation, a member of the Dystonia Advocacy
Network (DAN) is pleased to announce 2011 Capitol Hill Advocacy Day will be
held on Tuesday, May 10th and Wednesday, May 11th at the Embassy Suites DC
Convention Center in Washington, DC. This annual event brings dystonia
advocates from across the country together to work in support of a legislative
agenda that focuses on bolstering dystonia research and improving patient
care.

The May 10th portion of the event will feature comprehensive advocacy training
sessions, a review of our legislative priorities, and a networking dinner. On
May 11th, advocates will travel to Capitol Hill to meet with the offices of
their elected officials and use their stories to enlist congressional support.

If you would like to register for advocacy day, please visit the registration
page on the DAN website: [2]http://dystonia-advocacy.org/advocacy-day-signup/.

If you would like additional information about this event, please contact
DMRF’s Grassroots Coordinator, Dane Christiansen, at
[3]dchristiansen@dystonia-foundation.org.

News You Can Use

Merz Pharmaceuticals introduces two new programs to provide patients with
financial assistance for their treatment with Xeomin®,

a botulinum toxin type, approved by the FDA for the treatment of adults with
cervical dystonia, and blepharospasm.

The Xeomin Patient Co-payment Program offers eligible patients assistance for
their actual out-of-pocket costs for therapeutic treatment with Xeomin. Merz
also announced the launch of the Xeomin Patient Assistance Program, a program
to provide Xeomin at no cost to eligible patients who are experiencing
financial hardship and who do not have third party drug coverage. [4]Click here
if you would like to learn more about the programs and the enrollment process.

University of Alabama at Birmingham

Dystonia Symposium

April 8th is your chance to talk one-on-one with some of the most prominent,
experienced medical & therapeutic practioneers in Alabama for dystonia
patients. Sponsored by the Dystonia Support Group of Alabama. Space is limited
so hurry up and register. [5]To learn more about this symposim click here.

Dystonia Educational Forum

Please join us for this special meeting that will take place in Seattle, WA on
Friday, April 29, 2011. Presenting the latest developments in living with
dystonia. Some of the topics include, current treatments, Deep Brain
Stimulation and exercise. Registration is required. [6]Fore more details and to
register, click here.

Faces of Dystonia

Submissions for the Faces of Dystonia continue to roll in and soon we will
share them with you. Want to be a Face of Dystonia? Don't wait, submit your
story today.

The DMRF celebrates members of the dystonia comunity and invites everyone to
participate in this special project.[7] Click here to find out more information
about the Faces of Dystonia.

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. The DMRF is fortunate to have dedicated
volunteers around the country who work tirelessly to promote awareness and
raise funds for research. The DMRF deeply appreciates every volunteer and every
effort.

Julie Zaia is participating in the Shamrock Marathon in Virginia Beach on March
20th in honor of her younger sister, Stephanie who has dystonia. [8]Click here
to learn more about Julie and why you should support her.

Dine for Dystonia, share a meal out with friends and feel good about helping
those with dystonia. On March 21st support Friends of Guido and enjoy a great
meal at Sal & Joe's restaurant in Maple

Shade, NJ. [9]Click here to learn more.

Gigi Kenney is only 6 years old but that is not stopping her. On March 26th she
will be running her first race at the Oakland Running Festival in Oakland, CA.
Gigi is raising awareness in honor of her mom who has dystonia. [10]If you
would like to learn more about Gigi and how you can support her click here.

On March 31st DMRF Ambassador and American Academy of Neurology award winner,
Billy McLaughlin, performs this solo acoustic guitar concert as part of the
performing arts at the Neurosciences Institute series in San Diego, CA. [11]To
register for the concert click here.

Walk with Fire, an art show featuring women metal sculpture artists taking
place on April 8th in Omaha, NE. This 2nd Annual art show will feature an
auction of donated pieces by each participating artist. [12]Learn more on why
this theme was the inspiration of the art show.

Return to Margaritaville in Danvers, MA on April 15th. A freedom to move dance
and fundraiser sponsored by The Friends of Paula Gates to benefit the Dystonia
Medical Research Foundation (DMRF).

[13]Click here for further details.

On April 30th, Krista Richter will be participating in the Leona Divide 50 Mile
in Lake Hughes, CA. [14]Learn more about Krista's story and why you should
support her.

Please join the Nathan Calvert Family for the 2nd Annual Yard Sale that will be
taking place on May 14th & 15th in North Caldwell, NJ.

Why wait? Register today!

Are you interested in becoming a member of the Dystance4Dystonia team? Have you
always wanted to participate in a run? Consider becoming a member of our team
for any of the runs below.

April 10th - [15]Bank of America Shamrock Shuffle

June 5th - [16]San Diego Marathon

September 18th - [17]Philadelphia Marathon

Contact us today and find out how you can support the work of the Dystonia
Medical Research Foundation (DMRF). For more information, please email
[18]Tammy Reed.

Upcoming Support Group Meetings

3/18 - [19]Dystonia Support Group of Spokane (WA)

3/19 - [20]Dystonia Support & Advocacy Group of [21]San Diego County (CA)

3/26 - [22]Greater Dallas/Dysphonia (TX)

4/02 - [23]Eastern Iowa/Western Illinois (IA)

4/10 - [24]Chicago Chapter (IL)

4/23 - [25]Tampa Bay Dystonia (FL)

4/26 - [26]The University of Miami South Florida Dystonia (FL)

5/15 - [27]Portland & SW Washington (OR)

5/21 - [28]North Bay (CA)

Tell us how we are doing. We would love to hear your thoughts about the
newsletter. Email us today at[29] enewsletter@dystonia-foundation.org

Would you like to access the newsletter 24/7? [30]dmrfenews.blogspot.com

Would you like to receive updates by text message?

Text DYSTONIA to 90999

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

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

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

* Please see Terms & Conditions below

[39]Are you a federal government or military employee looking to support the
work of the DMRF?

Dystonia Medical Research Foundation One East Wacker Drive, Suite 2810,
Chicago, IL 60601-1905

Phone (312) 755-0198 Toll Free (800) 377-3978 Fax (312) 803-0138

Web www.dystonia-foundation.org Email dystonia@dystonia-foundation.org

* Terms and Conditions for the Membership Rewards program apply. Visit
[40]membershiprewards.com/terms for more information.

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

References

1. mailto:enewsletter@dystonia-foundation.org
2. http://dystonia-advocacy.org/advocacy-day-signup/
3. mailto:dchristiansen@dystonia-foundation.org?subject=2011%20Advocacy%20Day
4. http://www.dystonia-foundation.org/pages/merz_pharmaceuticals_introduces_programs_to_provide_patients_with_financial_assistance_for_xeomin/619.php
5. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=193&Itemid=89&year=2011&month=04&day=08&title=university-of-alabama-at-birmingham-dystonia-symposium&uid=72b6b6379a1d345bde6e2ce1bd4e53a7
6. http://www.dmrfevents.org/event.php?439945
7. http://www.dystonia-foundation.org/pages/faces/611.php
8. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=182&Itemid=89&year=2011&month=03&day=20&title=julie-zaia-shamrock-marathon&uid=74cce0c265765e6182850fd0f3e36b04
9. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=187&Itemid=89&year=2011&month=03&day=21&title=dine-for-dystonia&uid=bdb30ffcd5e3808bebfbdb2d75f25590
10. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalevent.detail&evid=169&Itemid=89&year=2011&month=03&day=26
11. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=181&Itemid=89&year=2011&month=03&day=31&title=the-neurosciences-institute-auditorium-solo-guitar-performance-featuring-billy-mclaughlin&uid=49b1dd624e3785715287c9c325d1fd29
12. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=196&Itemid=89&year=2011&month=04&day=08&title=women-who-weld-omaha-ne&uid=48ee24e4dd8a5c3d70c78eec082cbd02
13. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=179&Itemid=89&year=2011&month=04&day=15&title=return-to-margaritaville&uid=cebbb5b12ea9d09a26346f15664fff6e
14. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=192&Itemid=89&year=2011&month=04&day=30&title=krista-richter-leona-divide-50-mile&uid=08cae2c41fc7b46ea4d5cd673d144bf2
15. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=166&Itemid=89&year=2011&month=04&day=10&title=bank-of-america-shamrock-shuffle-2011&uid=7eab4757db66442cdd04098e15ec63e4
16. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=167&Itemid=89&year=2011&month=06&day=05&title=san-diego-marathon&uid=4d2198a9f021376d8fc70453dccf350b
17. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=168&Itemid=89&year=2011&month=09&day=18&title=philadelphia-marathon&uid=1fea27a6717d0d81ff6e8d2e78b6dfd5
18. mailto:treed@dystonia-foundation.org?subject=Dystance4Dystonia
19. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=178&Itemid=89&year=2011&month=03&day=18&title=dystonia-support-group-of-spokane&uid=24dc2bbe86749a8fcee7ab482c542f14
20. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=194&Itemid=89&year=2011&month=03&day=19&title=dystonia-support-a-advocacy-group-of-san-diego-county&uid=462db88fe93dc28c9a882e7472136269
21. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=194&Itemid=89&year=2011&month=03&day=19&title=dystonia-support-a-advocacy-group-of-san-diego-county&uid=462db88fe93dc28c9a882e7472136269
22. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=197&Itemid=89&year=2011&month=03&day=26&title=greater-dallas-dystoniadysphonia-support-group&uid=58d8d7878271fa727a4a80f3a4859df0
23. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=195&Itemid=89&year=2011&month=04&day=02&title=eastern-iowawestern-illinois-dystonia-support-group&uid=0abf0fa55684b6d818b04babd74348f5
24. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=171&Itemid=89&year=2011&month=04&day=10&title=chicago-chapter-sg-meeting&uid=290cf7bf36148940acc5b02e7dd438e1
25. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=183&Itemid=89&year=2011&month=04&day=23&title=tampa-bay-dystonia-sg-meeting&uid=51cc25cb3545b4bc2aad28a3ba960d0c
26. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=201&Itemid=89&year=2011&month=04&day=26&title=the-university-of-miami-south-florida-dystonia-support-group&uid=f77ffe00b73db7e88f95a140e725e388
27. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=189&Itemid=89&year=2011&month=05&day=15&title=portland-a-sw-washington-dystonia-sg-meeting&uid=160c6ab0075e719ffdc867c726a5fff2
28. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=156&Itemid=89&year=2011&month=05&day=21&title=north-bay-dystonia-sg-meeting&uid=7521020e6a567162de21e822baeedc9e
29. mailto:enewsletter@dystonia-foundation.org?subject=Thoughts%20about%20eNews
30. http://dmrfenews.blogspot.com/
31. http://www.myspace.com/thedmrf
32. http://www.youtube.com/user/cemiwire
33. http://www.facebook.com/pages/Dystonia-Medical-Research-Foundation/46820882711
34. http://twitter.com/dmrf
35. http://thedmrf.ning.com/
36. http://dystance4dystonia.org/joomla/index.php?option=com_content&view=article&id=47&Itemid=55
37. http://dystance4dystonia.org/joomla/index.php?option=com_content&view=article&id=46&Itemid=54
38. https://amex.justgive.org/nonprofits/donate.jsp?ein=95-3378526
39. http://www.dystonia-foundation.org/pages/combined_federal_campaign/595.php
40. https://secure.cmax.americanexpress.com/Internet/US/Travel/CTN/Components/CTN_ECOMM_TSO_SERVICE_OFFERED/Terms%20and%20Conditions_112443.html

DMRF eNews - February 2011

DMRF eNews

February 2011

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

This year marks the 100th Anniversary of Dr. Oppentreim's seminal paper
describing dystonia and the 35th Anniversary of the Foundation. Although this
is not something we want to celebrate - we'd much rather have achieved our goal
of a cure and closed our doors years ago - it is appropriate to look back at
the progress we have made.

The DMRF continues to be a leader in the fight for advancing research. We are
working toward that magical day when no one has to suffer from dystonia and we
know research will get us there. Since our founding, the DMRF has provided over

$25 million in support of over 400 research projects. This past year alone, the
DMRF committed to over 2 million to our science program - including a major
initiative to identify new targets that may lead to the development of new
drugs that will expand the limited menue of treatment options available to
those who are suffering.

The DMRF is working with the National Institutes of Health (NIH),
pharmaceutical and biotech companies, and the scientific and medical
communities to increase the breadth and depth of dystonia related research. We
continue to attract young, bright professional who are dedicated themselves to
uncovering the mysteries of this disease.

We are grateful to everyone in the dystonia community who has worked tirelessly
over the years to provide support and to promote dystonia awareness and
education, and raise funds for research.

Brain Donor Program

The DMRF is pleased to announce that it is now working with the Harvard Brain
Tissue Resource Center at McLean Hospital in Massachusetts (HBTRC) to establish
a private dystonia tissue collection. In seeking a new treatment and ultimately
a cure for dystonia, the Foundation believes that this new partnership will
more effectively assist investigators in their dystonia research.

Giving scientists the opportunity to study dystonia tissue is a crucial step
toward developing improved therapies and a cure for dystonia in all its forms.
Brain donation provides you the unique opportunity to contribute to the field
of dystonia research in a practical way that will assist researchers. Consider
becoming a brain donor and discuss this possibility with your family members.
Your body contains clues vital to solving the puzzle of dystonia. [2]Click here
to learn more.

Seeking volunteers with Cervical Dystonia

Ipsen, manufacturer of Dysport™ (also known in the US as abobotulinumtoxin A),
is working with physicians to conduct a study to determine typical patient
response to this treatment for adults with cervical dystonia. The study,
called ANCHOR - CD (AbobotulinumtoxinA Neurotoxin Clinical & Health Economics
Outcomes Registry in Cervical Dystonia) looks to recruit 400 patients who are
being treated with Dysport and is being conducted through physicians' practices
across the country.

[3]For more information please click here.

Investigators at Mount Sinai School of Medicine are recruiting patients for
three focal dystonia studies:

I. Focal Primary Dystonia: Writer's Cramp, Cervical Dystonia, Blepharospasm,
Spasmodic Dysphonia - The purpose of this experimental study is to investigate
changes in the brain of patients with focal dystonias.

II. Writer’s Cramp – The purpose of this experimental study is to investigate
brain function in people with writer’s cramp (hand dystonia).

III. Spasmodic Dysphonia - The purpose of this study is to investigate the
effect of a novel drug, sodium oxybate, on symptoms and brain changes in
patients with spasmodic dysphonia and essential tremor of voice.

[4]Click here for more information.

For additional information on any of these studies, please call:

(212) 241-0656. Ask to speak to Dr. Kristina Simonyan.

Faces of Dystonia

Do you want to be a Face of Dystonia? Help the DMRF create a mosaic of faces
and stories from the dystonia community by sharing your photo and a few words
about your dystonia experience. Submissions will be collected throughout the
year and posted in a special section of the DMRF webiste.

The DMRF celebrates members of the dystonia comunity and invites everyone to
participate in this special project.[5] Click here to find out more information
about the Faces of Dystonia.

Guitar Performance featuring Billy McLaughlin

The Neurosciences Institute Auditorium Solo Guitar Performance featuring Billy
McLaughling will take place on March 31, 2011 (Billy performs this solo
acoustic guitar conert as part of the performing arts at the Neurosciences
Institute series). [6]Click here for more information about the concert.

If you missed it....

On January 26, 2011, DMRF Science Officer Jan Teller, MA, PhD provided the
latest information on the field of dystonia research and the DMRF Science
Program. This informative webinar provided an overview of the most promising
areas in dystonia research and what to watch this year for progress. If you
would like to view and listen to the webinar recording, please [7]click here.

On February 9, 2011 DMRF member Alex John appeared on a special episode of "The
Doctors" TV show. This was her third time on the show and the episode followed
her Deep Brain Stimulation (DBS) surgery. Watch her progress after being
diagnosed with dystonia. If you missed it, [8]click here to check out brief
scenes from the show.

Workplace Campaigns

The DMRF participates in the world's largest and most successful workplace
charity program, the Combined Federal Campaign (CFC). Through the CFC campaign,
government employees are able to make regular donations in support of the DMRF
through payroll deductions.

If you are a federal government or military employee and would like to support
the work of the DMRF, please take part in the Combined Federal Campaign by
entering the DMRF's name.

Don't know if your agency is taking part in the CFC program?

Contact your Human Resources Department to find out more.

Don't wait - Registration is Now Open!

The Bank of America Shamrock Shuffle is now open for registration. The 8K
course will take place in Chicago on April 10, 2011. Why wait, [9]register
today and join the DMRF in helping spread awareness and raise funds for
dystonia.

The Bank of America Chicago Marathon taking place on October 9, 2011, is open
for registration as well. Don't delay, registration is filling up fast,
[10]register today and support the DMRF.

If you have any questions about the Dystance4Dystonia program, please contact
Tammy Reed at [11]treed@dystonia-foundation.org.

Coming Soon...

Come out and join us for some of our upcoming events. The DMRF is fortunate and
very grateful to have dedicated volunteers around the country who work
tirelessly to promote awareness and fundraise for research. The following are
some of the events coming to you soon.

3/08 Fat Tuesday Dinner - Omaha, NE (Sally Presby)

3/20 Shamrock Marathon - Virginia Beach, VA (Julie Zaia)

4/8-9 Women Who Weld - Omaha, NE (Melinda Eames)

4/10 Bank of America Shamrock Shuffle - Chicago, IL

4/15 Return to Margaritaville - Danvers, MA (Paula Gates)

4/30 Leona Divide 50 Mile - Lake Hughes, CA (Krista Richter)

5/14-15 Nathan Calvert Yard Sale - N. Caldwell, NJ (Sandra Calvert Nathans)

Tell us how we are doing. We would love to hear your thoughts about the
newsletter. Email us today at[12] enewsletter@dystonia-foundation.org

Would you like to access the newsletter 24/7? [13]dmrfenews.blogspot.com

Would you like to receive updates by text message?

Text DYSTONIA to 90999

Coming Soon...

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

Upcoming Events

3/05 [20]Rhode Island Dystonia SG

3/06 [21]Greater Washington DC SG

3/18 [22]Dystonia SG of Spokane

4/10 [23]Chicago Chapter SG

[24]Bank of America Shamrock Shuffle

4/15 [25]Return To Margaritaville

5/21 [26]North Bay Dystonia SG

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

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

* Please see Terms & Conditions below

[29]Are you a federal government or military employee looking to support the
work of the DMRF?

Dystonia Medical Research Foundation One East Wacker Drive, Suite 2810,
Chicago, IL 60601-1905

Phone (312) 755-0198 Toll Free (800) 377-3978 Fax (312) 803-0138

Web www.dystonia-foundation.org Email dystonia@dystonia-foundation.org

* Terms and Conditions for the Membership Rewards program apply. Visit
[30]membershiprewards.com/terms for more information.

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

References

1. mailto:enewsletter@dystonia-foundation.org
2. http://www.dystonia-foundation.org/pages/become_a_brain_donor/162.php
3. http://www.dystonia-foundation.org/pages/volunteers_with_cervical_dystonia_needed_for_study/614.php
4. http://www.dystonia-foundation.org/pages/researchers_need_volunteers_for_dystonia_studies/616.php
5. http://www.dystonia-foundation.org/pages/faces/611.php
6. http://www.dmrfevents.org/event.php?475078
7. http://www.dystonia-foundation.org/pages/dystonia_research_update_webinar_01_26_11/613.php
8. http://thedoctorstv.com/main/show_page/700
9. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=166&Itemid=89&year=2011&month=04&day=10&title=bank-of-america-shamrock-shuffle-2011&uid=7eab4757db66442cdd04098e15ec63e4&catids=37
10. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=164&Itemid=89&year=2011&month=10&day=09&title=bank-of-america-chicago-marathon-2011&uid=d3d3cace7935275bebc1ad13df9ccdf8
11. mailto:treed@dystonia-foundation.org?subject=Bank%20of%20America%20Shamrock%20Shuffle
12. mailto:enewsletter@dystonia-foundation.org?subject=Thoughts%20about%20eNews
13. http://dmrfenews.blogspot.com/
14. http://www.myspace.com/thedmrf
15. http://www.youtube.com/user/cemiwire
16. http://www.facebook.com/pages/Dystonia-Medical-Research-Foundation/46820882711
17. http://twitter.com/dmrf
18. http://thedmrf.ning.com/
19. http://dystance4dystonia.org/joomla/index.php?option=com_content&view=article&id=47&Itemid=55
20. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=175&Itemid=89&year=2011&month=03&day=05&title=rhode-island-dystonia-sg-meeting&uid=c8d49a8769865fea7b1c212b21613ffd
21. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=174&Itemid=89&year=2011&month=03&day=06&title=greater-washington-dc-dystonia-sg-meeting&uid=b1e7747ecec43fc07af63eeaa8bfb4fa
22. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=178&Itemid=89&year=2011&month=03&day=18&title=dystonia-support-group-of-spokane&uid=24dc2bbe86749a8fcee7ab482c542f14
23. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=171&Itemid=89&year=2011&month=04&day=10&title=chicago-chapter-sg-meeting&uid=290cf7bf36148940acc5b02e7dd438e1
24. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=166&Itemid=89&year=2011&month=04&day=10&title=bank-of-america-shamrock-shuffle-2011&uid=7eab4757db66442cdd04098e15ec63e4&catids=37
25. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=179&Itemid=89&year=2011&month=04&day=15&title=return-to-margaritaville&uid=cebbb5b12ea9d09a26346f15664fff6e
26. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=156&Itemid=89&year=2011&month=05&day=21&title=north-bay-dystonia-sg-meeting&uid=7521020e6a567162de21e822baeedc9e
27. http://dystance4dystonia.org/joomla/index.php?option=com_content&view=article&id=46&Itemid=54
28. https://amex.justgive.org/nonprofits/donate.jsp?ein=95-3378526
29. http://www.dystonia-foundation.org/pages/combined_federal_campaign/595.php
30. https://secure.cmax.americanexpress.com/Internet/US/Travel/CTN/Components/CTN_ECOMM_TSO_SERVICE_OFFERED/Terms%20and%20Conditions_112443.html