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
Thursday, September 1, 2011
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
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
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
Subscribe to:
Posts (Atom)
Posts
