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
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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
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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://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