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

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[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

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[55]membershiprewards.com/terms for more information.

Dollar donations are tax deductible the full extent allowed by law however,
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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
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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