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
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the 2.25% American Express processing fee, from our partner JustGive. This
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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