DMRF eNews
May 2011
To ensure delivery, please add [1]enewsletter@dystonia-foundation.org to your
address book.
Registration is open for the Children & Family Dystonia Symposium
The 6th John H. Menkes Children & Family Dystonia Symposium will take place
August 19-21, 2011 at the Holiday Inn Mart Plaza, Chicago, IL.
The purpose of the symposium is to bring individuals and families together to
learn about dystonia and the DMRF, interact with experts, and find support
among one another. There will be special sessions for children ages 6-12,
teens, siblings, parents of affected children, and dystonia-affected
adults/parents.
[2]Click here to learn more information and to register.
Dystonia Research Funding
The DMRF is pleased to announce that dystonia has been included in the FY11
Department of Defense Peer-Reviewed Medical Research Program. The inclusion of
dystonia as an eligible condition was made possible through the efforts of the
Dystonia Advocacy Network (DAN), which is compromised of the Benign Essential
Blepharospasm Research Foundation, DySTonia, Inc., the Dystonia Medical
Research Foundation, the National Dysphonia Association, and the National
Spasmodic Torticollis Association. To learn more, please[3] click here.
Advocacy Day Update
Thank you to the many DMRF advocates who joined with other Dystonia Advocacy
Network members for Advocacy Day in Washington, DC on May 10th and 11th.
Nearly 150 meetings were held with Members of Congress and/or their staff to
discuss the need for NIH funding, including dystonia on the DOD list of
eligible diseases for research funding through the Peer Review Medical Research
Program and efforts to ensure patient access to qualified physicians and
approved dystonia treatments. You all did a great job!
If you are interested in becoming an advocate please visit the DAN website at
[4]www.dystonia-advocacy.org.
Have you become a face yet?
The DMRF is pleased to launch a new section of the website called "Faces of
Dystonia." [5]Click here to view.
"Faces of Dystonia" celebrates individuals with dystonia and demonstrates the
diversity in the community--dystonia affects people of all backgrounds, ages,
and genders.
The DMRF will be adding stories to the mosaic all year. To add your experience
to the "Faces" of Dystonia" collection, [6]click here to fill out a brief form
and upload a photo. Feel free to share this link with others living with
dystonia - the more stories, the merrier!
Thank you for your participation.
Go the Dystance 4 Dystonia!
The DMRF is fortunate to have dedicated and creative volunteers around the
country who work hard to promote dystonia awareness and raise funds for
research. If you are interested in learning about our programs, contact Tammy
at [7]treed@dystonia-foundation.org.
5/21 - [8]Dogs4Dystonia Dog Walk - Reston, VA
6/05 - [9]Dystance4Dystonia Walk - Florence, MA
6/05 - [10]San Diego Marathon - San Diego, CA
To find out what's going on in your neighborhood or anywere else just [11]click
here.
Monthly Donor Program
Giving to the DMRF through our Monthly Giving Plan provides sustainable support
of our programs. Your monthly gift will help cut postage, paper, administrative
and overhead costs. Become a partner in the DMRF Monthly Giving Plan today!
Call us to find out more at 312-755-0198 or 800-377-3978 or email us at
[12]dystonia@dystonia-foundation.org.
Upcoming Support Group Meetings
5/21 - [13]North Bay Dystonia (Santa Rosa, CA)
5/21 - [14]Arkansas Dystonia (Sherwood, AR)
5/21 - [15]New Mexico Dystonia (Albuquerque, NM)
5/21 - [16]Dystonia Support & Advocacy Group of San Diego County (CA)
6/04 - [17]Los Angeles Dystonia (Los Angeles, CA)
6/11 - [18]Southwest Region of Florida (Tampa, FL)
7/13 - [19]Quad-City Dystonia (Eldridge, IA)
8/13 - [20]North Bay Dystonia (Santa Rosa, CA)
Coming Soon...
Dystonia Awareness Week - June 5-11, 2011
Twitter Awareness Day - Tuesday, June 7, 2011
Tell us how we are doing. We would love to hear your thoughts about the
newsletter. Email us today at[21] enewsletter@dystonia-foundation.org
Would you like to access the newsletter 24/7? [22]dmrfenews.blogspot.com
Would you like to receive updates by text message?
Text DYSTONIA to 90999
[28]Go the Dystance4Dystonia and run for those who can't!
[29]Host a Dogs4Dystonia Dog Walk in your community today!
[30]Are you an American Express card holder looking for additional ways to
support the work of the DMRF?
* Please see Terms & Conditions below
[31]Are you a federal government or military employee looking to support the
work of the DMRF?
Dystonia Medical Research Foundation One East Wacker Drive, Suite 2810,
Chicago, IL 60601-1905
Phone (312) 755-0198 Toll Free (800) 377-3978 Fax (312) 803-0138
Web www.dystonia-foundation.org Email dystonia@dystonia-foundation.org
* Terms and Conditions for the Membership Rewards program apply. Visit
[32]membershiprewards.com/terms for more information.
Dollar donations are tax deductible the full extent allowed by law however,
donations of Membership Rewards points are not tax deductible.Please note:
American Express will deduct a transaction fee of 2.25% from the donation to
cover processing costs. The charities will receive your donation amount, minus
the 2.25% American Express processing fee, from our partner JustGive. This
transaction fee is similar to or less than the processing fee the charity would
pay if you were to charge your donation with your American Express® Card
through any other means (i.e., over the phone to the charity, through the
charity's website, etc.). This transaction fee only applies to monetary
donations placed on your American Express® Card and not to donations that are
made via the redemption of Membership Rewards points. Dollar donations are tax
deductible the full extent allowed by law however, donations of Membership
Rewards points are not tax deductible.Please consult your tax advisor on the
deductibility of a donation of Membership Rewards points.
References
1. mailto:enewsletter@dystonia-foundation.org
2. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=147&Itemid=89&year=2011&month=08&day=19&title=6th-john-h-menkes-children-a-family-dystonia-symposium&uid=8c2ce47afdc141a8f8ae81e238afa412
3. http://www.dystonia-foundation.org/pages/dystonia_included_in_dept_of_defense_s_research_program/626.php
4. http://dystonia-advocacy.org/
5. http://www.dystonia-foundation.org/pages/faces_of_dystonia/620.php
6. http://www.dystonia-foundation.org/pages/faces_of_dystonia/611.php
7. mailto:treed@dystonia-foundation.org?subject=Dystance4Dystonia
8. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=208&Itemid=89&year=2011&month=05&day=21&title=dogs4dystonia-dog-walk-reston-va&uid=216fdf93ceb26b7ba867b0a06ee59439&catids=38
9. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=211&Itemid=89&year=2011&month=06&day=05&title=dystance4dystonia-walk-for-dystonia-awarenessflorence-ma&uid=547f701de078d176119ca140063f0301&catids=37
10. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=167&Itemid=89&year=2011&month=06&day=05&title=san-diego-marathon&uid=4d2198a9f021376d8fc70453dccf350b&catids=37
11. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&view=cat&task=cat.listevents&Itemid=89
12. mailto:dystonia@dystonia-foundation.org?subject=Monthly%20Giving%20Plan
13. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=156&Itemid=89&year=2011&month=05&day=21&title=north-bay-dystonia-sg-meeting&uid=7521020e6a567162de21e822baeedc9e
14. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=220&Itemid=89&year=2011&month=05&day=21&title=arkansas-dystonia-sg-meeting&uid=93b091bc928195bc0348981a2ea71369
15. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=219&Itemid=89&year=2011&month=05&day=21&title=new-mexico-dystonia-sg-meeting&uid=86575f011452d65fecc48f472b2c6956
16. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=207&Itemid=89&year=2011&month=05&day=21&title=dystonia-support-a-advocacy-group-of-san-diego-county&uid=271bd0cac644525b4a052d957e9b8089
17. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=222&Itemid=89&year=2011&month=06&day=04&title=los-angeles-dystonia-support-group&uid=044429d13c58254d05ced864adbb772c
18. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=225&Itemid=89&year=2011&month=06&day=11&title=southwest-region-of-florida&uid=37b663d07011d0be799ab288bbc93474
19. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=215&Itemid=89&year=2011&month=07&day=23&title=quad-city-dystonia-support-group&uid=d21c08afb42baa375221956851da6e3c
20. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=157&Itemid=89&year=2011&month=08&day=13&title=north-bay-dystonia-sg-meeting&uid=34fead075feda77c759f4f1df2925fde
21. mailto:enewsletter@dystonia-foundation.org?subject=Thoughts%20about%20eNews
22. http://dmrfenews.blogspot.com/
23. http://www.myspace.com/thedmrf
24. http://www.youtube.com/user/cemiwire
25. http://www.facebook.com/pages/Dystonia-Medical-Research-Foundation/46820882711
26. http://twitter.com/dmrf
27. http://thedmrf.ning.com/
28. http://dystance4dystonia.org/joomla/index.php?option=com_content&view=article&id=47&Itemid=55
29. http://dystance4dystonia.org/joomla/index.php?option=com_content&view=article&id=46&Itemid=54
30. https://amex.justgive.org/nonprofits/donate.jsp?ein=95-3378526
31. http://www.dystonia-foundation.org/pages/combined_federal_campaign/595.php
32. https://secure.cmax.americanexpress.com/Internet/US/Travel/CTN/Components/CTN_ECOMM_TSO_SERVICE_OFFERED/Terms%20and%20Conditions_112443.html
Monday, June 6, 2011
DMRF eNews - April 2011
DMRF eNews
April 2011
To ensure delivery, please add [1]enewsletter@dystonia-foundation.org to your
address book.
News You Can Use
The Center for Medicare and Medicaid Services (CMS) has granted a unique
billing code for the recently approved botulinum toxin, Xeomin® . This took
effect on April 1st and will make it easier for physicians to bill and be
reimbursed for this FDA approved treatment for dystonia. It is important for
doctors and patients to have access to all medications approved to treat
dystonia. Congratulations to the dystonia advocates who met with CMS officials
to help them understand the importance of issuing this temporary code, giving
access to this treatment for the dystonia community.
For more detail information,[2] click here.
New Dystonia Support Group
The University of Miami South Florida Dystonia Support Group will host its
first support group meeting on Tuesday, April 26th, at the
St. Catherine's Rehabilitation Hospital & Villa Maria Nursing Center. This
support group is for patients with dystonia and their caregivers. If you would
like more information or would like to attend, please [3]click here.
Dystonia Educational Forum
The Dystonia Medical Research Foundation (DMRF) would like to invite you to
join us in Seattle, WA on Friday, April 29th for this special meeting where you
will be presented with the latest developments on living with dystonia. Topics
will include an overview of dystonia, current treatments, Deep Brain
Stimulation and exercise.
We are pleased to invite you to this meeting at no charge with lunch included.
Registration is required. For more details and to register, [4]click here.
Dystonia Advocacy Day
The Dystonia Medical Research Foundation, a member of the Dystonia Advocacy
Network (DAN), is pleased to announce 2011 Capitol Hill Advocacy Day will be
held on Tuesday, May 10th and Wednesday, May 11th at the Embassy Suites DC
Convention Center in Washington, DC. This annual event brings dystonia
advocates from across the country together to work in support of a legislative
agenda that focuses on bolstering dystonia research and improving patient care.
If you would like additional information about this event, please contact
DMRF's Grassroots Coordinator, Dane Christiansen, at
[5]dchristiansen@dystonia-foundation.org
Save the Date!
The 6th John H. Menkes Children & Family Dystonia Symposium will take place
August 19-21, 2011 at the Holiday Inn Mart Plaza, Chicago, IL.
The purpose of the symposium is to bring individuals and families together to
learn about dystonia and the DMRF, interact with experts, and find support
among one another. There will be special sessions for children under 13, teens,
siblings, parents of affected children, and dystonia-affected adults/parents.
Look for registration information at [6]www.dystonia-foundation.org in the
coming weeks.
How Did You Overcome Misdiagnosis?
Go to [7]https://www.surveymonkey.com/s/diagnosis and share your experience.
Faces of Dystonia
Submissions for the Faces of Dystonia continue to roll in and soon we will
share them with you. The DMRF celebrates members of the dystonia comunity and
invites everyone to participate in this special project. [8]Click here to find
out more information about the Faces of Dystonia. Want to be a Face of
Dystonia? Don't wait, submit your story today.
Events taking place soon...
The DMRF is fortunate to have dedicated and creative volunteers around the
country who work hard to promote dystonia awareness and raise funds for
research. The following are some of the events coming to you soon.
4/15 [9]Return to Margaritaville - Danvers, MA (Paula Gates)
4/30 [10]Leona Divide 50 Mile - Lake Hughes, CA (Krista Richter)
5/14-15 Nathan Calvert Yard Sale - NJ (Sandra Calvert Nathans)
5/15 [11] Dystance4Dystonia Walk - Apple Valley, CA (Terry Kafides)
5/21 [12]Dogs4Dystonia Dog Walk - Reston, VA (Hunter Webster)
6/05 [13]Dystance4Dystonia Walk - Florence, MA (Becky Cortis)
If you are interested in joining any of our two programs, Dystance4Dystonia or
Dogs4Dystonia, please email Tammy Reed at [14]treed@dystonia-foundation.org.
Upcoming Support Group Meetings
4/16 - [15]Baltimore/John Hopkins Dystonia (ME)
4/23 - [16]Tampa Bay Dystonia (FL)
4/26 - [17]The University of Miami South Florida Dystonia (FL)
4/28 - [18]Dystonia Support Group of Spokane (WA)
5/15 -[19] Portland & SW Washington (OR)
5/21 - [20]North Bay Dystonia (CA)
5/21 - [21]Dystonia Support & Advocacy Group of San Diego County (CA)
Tell us how we are doing. We would love to hear your thoughts about the
newsletter. Email us today at[22] enewsletter@dystonia-foundation.org
Would you like to access the newsletter 24/7? [23]dmrfenews.blogspot.com
Would you like to receive updates by text message?
Text DYSTONIA to 90999
[29]Go the Dystance4Dystonia and run for those who can't!
[30]Host a Dogs4Dystonia Dog Walk in your community today!
[31]Are you an American Express card holder looking for additional ways to
support the work of the DMRF?
* Please see Terms & Conditions below
[32]Are you a federal government or military employee looking to support the
work of the DMRF?
Dystonia Medical Research Foundation One East Wacker Drive, Suite 2810,
Chicago, IL 60601-1905
Phone (312) 755-0198 Toll Free (800) 377-3978 Fax (312) 803-0138
Web www.dystonia-foundation.org Email dystonia@dystonia-foundation.org
* Terms and Conditions for the Membership Rewards program apply. Visit
[33]membershiprewards.com/terms for more information.
Dollar donations are tax deductible the full extent allowed by law however,
donations of Membership Rewards points are not tax deductible.Please note:
American Express will deduct a transaction fee of 2.25% from the donation to
cover processing costs. The charities will receive your donation amount, minus
the 2.25% American Express processing fee, from our partner JustGive. This
transaction fee is similar to or less than the processing fee the charity would
pay if you were to charge your donation with your American Express® Card
through any other means (i.e., over the phone to the charity, through the
charity's website, etc.). This transaction fee only applies to monetary
donations placed on your American Express® Card and not to donations that are
made via the redemption of Membership Rewards points. Dollar donations are tax
deductible the full extent allowed by law however, donations of Membership
Rewards points are not tax deductible.Please consult your tax advisor on the
deductibility of a donation of Membership Rewards points.
References
1. mailto:enewsletter@dystonia-foundation.org
2. http://www.dystonia-foundation.org/pages/merz_announces_new_centers_for_medicare_and_medicaid_billing_q_code_for_xeomin_/622.php
3. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=201&Itemid=89&year=2011&month=04&day=26&title=the-university-of-miami-south-florida-dystonia-support-group&uid=f77ffe00b73db7e88f95a140e725e388
4. http://www.dmrfevents.org/event.php?439945
5. mailto:dchristiansen@dystonia-foundation.org?subject=Advocacy%20Day
6. http://www.dystonia-foundation.org/
7. https://www.surveymonkey.com/s/diagnosis
8. http://www.dystonia-foundation.org/pages/faces/611.php
9. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=179&Itemid=89&year=2011&month=04&day=15&title=return-to-margaritaville&uid=cebbb5b12ea9d09a26346f15664fff6e
10. http://www.dmrfevents.org/event.php?444798
11. http://www.rsvpbook.com/event.php?435597
12. http://www.rsvpbook.com/event.php?492995
13. http://www.rsvpbook.com/event.php?476265
14. mailto:treed@dystonia-foundation.org?subject=Dystance4Dystonia%2FDogs4Dystonia
15. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=203&Itemid=89&year=2011&month=04&day=16&title=baltimorejohn-hopkins-dystonia-sg-meeting&uid=1607a77d37824cb41864643a47585fa0
16. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=183&Itemid=89&year=2011&month=04&day=23&title=tampa-bay-dystonia-sg-meeting&uid=51cc25cb3545b4bc2aad28a3ba960d0c
17. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=201&Itemid=89&year=2011&month=04&day=26&title=the-university-of-miami-south-florida-dystonia-support-group&uid=f77ffe00b73db7e88f95a140e725e388
18. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=206&Itemid=89&year=2011&month=04&day=28&title=dystonia-support-group-of-spokane&uid=da42eb32b5c12566a95eb4c5e89043b4
19. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=189&Itemid=89&year=2011&month=05&day=15&title=portland-a-sw-washington-dystonia-sg-meeting&uid=160c6ab0075e719ffdc867c726a5fff2
20. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=156&Itemid=89&year=2011&month=05&day=21&title=north-bay-dystonia-sg-meeting&uid=7521020e6a567162de21e822baeedc9e
21. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=207&Itemid=89&year=2011&month=05&day=21&title=dystonia-support-a-advocacy-group-of-san-diego-county&uid=271bd0cac644525b4a052d957e9b8089
22. mailto:enewsletter@dystonia-foundation.org?subject=Thoughts%20about%20eNews
23. http://dmrfenews.blogspot.com/
24. http://www.myspace.com/thedmrf
25. http://www.youtube.com/user/cemiwire
26. http://www.facebook.com/pages/Dystonia-Medical-Research-Foundation/46820882711
27. http://twitter.com/dmrf
28. http://thedmrf.ning.com/
29. http://dystance4dystonia.org/joomla/index.php?option=com_content&view=article&id=47&Itemid=55
30. http://dystance4dystonia.org/joomla/index.php?option=com_content&view=article&id=46&Itemid=54
31. https://amex.justgive.org/nonprofits/donate.jsp?ein=95-3378526
32. http://www.dystonia-foundation.org/pages/combined_federal_campaign/595.php
33. https://secure.cmax.americanexpress.com/Internet/US/Travel/CTN/Components/CTN_ECOMM_TSO_SERVICE_OFFERED/Terms%20and%20Conditions_112443.html
April 2011
To ensure delivery, please add [1]enewsletter@dystonia-foundation.org to your
address book.
News You Can Use
The Center for Medicare and Medicaid Services (CMS) has granted a unique
billing code for the recently approved botulinum toxin, Xeomin® . This took
effect on April 1st and will make it easier for physicians to bill and be
reimbursed for this FDA approved treatment for dystonia. It is important for
doctors and patients to have access to all medications approved to treat
dystonia. Congratulations to the dystonia advocates who met with CMS officials
to help them understand the importance of issuing this temporary code, giving
access to this treatment for the dystonia community.
For more detail information,[2] click here.
New Dystonia Support Group
The University of Miami South Florida Dystonia Support Group will host its
first support group meeting on Tuesday, April 26th, at the
St. Catherine's Rehabilitation Hospital & Villa Maria Nursing Center. This
support group is for patients with dystonia and their caregivers. If you would
like more information or would like to attend, please [3]click here.
Dystonia Educational Forum
The Dystonia Medical Research Foundation (DMRF) would like to invite you to
join us in Seattle, WA on Friday, April 29th for this special meeting where you
will be presented with the latest developments on living with dystonia. Topics
will include an overview of dystonia, current treatments, Deep Brain
Stimulation and exercise.
We are pleased to invite you to this meeting at no charge with lunch included.
Registration is required. For more details and to register, [4]click here.
Dystonia Advocacy Day
The Dystonia Medical Research Foundation, a member of the Dystonia Advocacy
Network (DAN), is pleased to announce 2011 Capitol Hill Advocacy Day will be
held on Tuesday, May 10th and Wednesday, May 11th at the Embassy Suites DC
Convention Center in Washington, DC. This annual event brings dystonia
advocates from across the country together to work in support of a legislative
agenda that focuses on bolstering dystonia research and improving patient care.
If you would like additional information about this event, please contact
DMRF's Grassroots Coordinator, Dane Christiansen, at
[5]dchristiansen@dystonia-foundation.org
Save the Date!
The 6th John H. Menkes Children & Family Dystonia Symposium will take place
August 19-21, 2011 at the Holiday Inn Mart Plaza, Chicago, IL.
The purpose of the symposium is to bring individuals and families together to
learn about dystonia and the DMRF, interact with experts, and find support
among one another. There will be special sessions for children under 13, teens,
siblings, parents of affected children, and dystonia-affected adults/parents.
Look for registration information at [6]www.dystonia-foundation.org in the
coming weeks.
How Did You Overcome Misdiagnosis?
Go to [7]https://www.surveymonkey.com/s/diagnosis and share your experience.
Faces of Dystonia
Submissions for the Faces of Dystonia continue to roll in and soon we will
share them with you. The DMRF celebrates members of the dystonia comunity and
invites everyone to participate in this special project. [8]Click here to find
out more information about the Faces of Dystonia. Want to be a Face of
Dystonia? Don't wait, submit your story today.
Events taking place soon...
The DMRF is fortunate to have dedicated and creative volunteers around the
country who work hard to promote dystonia awareness and raise funds for
research. The following are some of the events coming to you soon.
4/15 [9]Return to Margaritaville - Danvers, MA (Paula Gates)
4/30 [10]Leona Divide 50 Mile - Lake Hughes, CA (Krista Richter)
5/14-15 Nathan Calvert Yard Sale - NJ (Sandra Calvert Nathans)
5/15 [11] Dystance4Dystonia Walk - Apple Valley, CA (Terry Kafides)
5/21 [12]Dogs4Dystonia Dog Walk - Reston, VA (Hunter Webster)
6/05 [13]Dystance4Dystonia Walk - Florence, MA (Becky Cortis)
If you are interested in joining any of our two programs, Dystance4Dystonia or
Dogs4Dystonia, please email Tammy Reed at [14]treed@dystonia-foundation.org.
Upcoming Support Group Meetings
4/16 - [15]Baltimore/John Hopkins Dystonia (ME)
4/23 - [16]Tampa Bay Dystonia (FL)
4/26 - [17]The University of Miami South Florida Dystonia (FL)
4/28 - [18]Dystonia Support Group of Spokane (WA)
5/15 -[19] Portland & SW Washington (OR)
5/21 - [20]North Bay Dystonia (CA)
5/21 - [21]Dystonia Support & Advocacy Group of San Diego County (CA)
Tell us how we are doing. We would love to hear your thoughts about the
newsletter. Email us today at[22] enewsletter@dystonia-foundation.org
Would you like to access the newsletter 24/7? [23]dmrfenews.blogspot.com
Would you like to receive updates by text message?
Text DYSTONIA to 90999
[29]Go the Dystance4Dystonia and run for those who can't!
[30]Host a Dogs4Dystonia Dog Walk in your community today!
[31]Are you an American Express card holder looking for additional ways to
support the work of the DMRF?
* Please see Terms & Conditions below
[32]Are you a federal government or military employee looking to support the
work of the DMRF?
Dystonia Medical Research Foundation One East Wacker Drive, Suite 2810,
Chicago, IL 60601-1905
Phone (312) 755-0198 Toll Free (800) 377-3978 Fax (312) 803-0138
Web www.dystonia-foundation.org Email dystonia@dystonia-foundation.org
* Terms and Conditions for the Membership Rewards program apply. Visit
[33]membershiprewards.com/terms for more information.
Dollar donations are tax deductible the full extent allowed by law however,
donations of Membership Rewards points are not tax deductible.Please note:
American Express will deduct a transaction fee of 2.25% from the donation to
cover processing costs. The charities will receive your donation amount, minus
the 2.25% American Express processing fee, from our partner JustGive. This
transaction fee is similar to or less than the processing fee the charity would
pay if you were to charge your donation with your American Express® Card
through any other means (i.e., over the phone to the charity, through the
charity's website, etc.). This transaction fee only applies to monetary
donations placed on your American Express® Card and not to donations that are
made via the redemption of Membership Rewards points. Dollar donations are tax
deductible the full extent allowed by law however, donations of Membership
Rewards points are not tax deductible.Please consult your tax advisor on the
deductibility of a donation of Membership Rewards points.
References
1. mailto:enewsletter@dystonia-foundation.org
2. http://www.dystonia-foundation.org/pages/merz_announces_new_centers_for_medicare_and_medicaid_billing_q_code_for_xeomin_/622.php
3. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=201&Itemid=89&year=2011&month=04&day=26&title=the-university-of-miami-south-florida-dystonia-support-group&uid=f77ffe00b73db7e88f95a140e725e388
4. http://www.dmrfevents.org/event.php?439945
5. mailto:dchristiansen@dystonia-foundation.org?subject=Advocacy%20Day
6. http://www.dystonia-foundation.org/
7. https://www.surveymonkey.com/s/diagnosis
8. http://www.dystonia-foundation.org/pages/faces/611.php
9. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=179&Itemid=89&year=2011&month=04&day=15&title=return-to-margaritaville&uid=cebbb5b12ea9d09a26346f15664fff6e
10. http://www.dmrfevents.org/event.php?444798
11. http://www.rsvpbook.com/event.php?435597
12. http://www.rsvpbook.com/event.php?492995
13. http://www.rsvpbook.com/event.php?476265
14. mailto:treed@dystonia-foundation.org?subject=Dystance4Dystonia%2FDogs4Dystonia
15. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=203&Itemid=89&year=2011&month=04&day=16&title=baltimorejohn-hopkins-dystonia-sg-meeting&uid=1607a77d37824cb41864643a47585fa0
16. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=183&Itemid=89&year=2011&month=04&day=23&title=tampa-bay-dystonia-sg-meeting&uid=51cc25cb3545b4bc2aad28a3ba960d0c
17. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=201&Itemid=89&year=2011&month=04&day=26&title=the-university-of-miami-south-florida-dystonia-support-group&uid=f77ffe00b73db7e88f95a140e725e388
18. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=206&Itemid=89&year=2011&month=04&day=28&title=dystonia-support-group-of-spokane&uid=da42eb32b5c12566a95eb4c5e89043b4
19. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=189&Itemid=89&year=2011&month=05&day=15&title=portland-a-sw-washington-dystonia-sg-meeting&uid=160c6ab0075e719ffdc867c726a5fff2
20. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=156&Itemid=89&year=2011&month=05&day=21&title=north-bay-dystonia-sg-meeting&uid=7521020e6a567162de21e822baeedc9e
21. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=207&Itemid=89&year=2011&month=05&day=21&title=dystonia-support-a-advocacy-group-of-san-diego-county&uid=271bd0cac644525b4a052d957e9b8089
22. mailto:enewsletter@dystonia-foundation.org?subject=Thoughts%20about%20eNews
23. http://dmrfenews.blogspot.com/
24. http://www.myspace.com/thedmrf
25. http://www.youtube.com/user/cemiwire
26. http://www.facebook.com/pages/Dystonia-Medical-Research-Foundation/46820882711
27. http://twitter.com/dmrf
28. http://thedmrf.ning.com/
29. http://dystance4dystonia.org/joomla/index.php?option=com_content&view=article&id=47&Itemid=55
30. http://dystance4dystonia.org/joomla/index.php?option=com_content&view=article&id=46&Itemid=54
31. https://amex.justgive.org/nonprofits/donate.jsp?ein=95-3378526
32. http://www.dystonia-foundation.org/pages/combined_federal_campaign/595.php
33. https://secure.cmax.americanexpress.com/Internet/US/Travel/CTN/Components/CTN_ECOMM_TSO_SERVICE_OFFERED/Terms%20and%20Conditions_112443.html
DMRF eNews - March 2011
DMRF eNews
March 2011
To ensure delivery, please add [1]enewsletter@dystonia-foundation.org to your
address book.
Join us for the 2011 Dystonia Advocacy Day
The Dystonia Medical Research Foundation, a member of the Dystonia Advocacy
Network (DAN) is pleased to announce 2011 Capitol Hill Advocacy Day will be
held on Tuesday, May 10th and Wednesday, May 11th at the Embassy Suites DC
Convention Center in Washington, DC. This annual event brings dystonia
advocates from across the country together to work in support of a legislative
agenda that focuses on bolstering dystonia research and improving patient
care.
The May 10th portion of the event will feature comprehensive advocacy training
sessions, a review of our legislative priorities, and a networking dinner. On
May 11th, advocates will travel to Capitol Hill to meet with the offices of
their elected officials and use their stories to enlist congressional support.
If you would like to register for advocacy day, please visit the registration
page on the DAN website: [2]http://dystonia-advocacy.org/advocacy-day-signup/.
If you would like additional information about this event, please contact
DMRF’s Grassroots Coordinator, Dane Christiansen, at
[3]dchristiansen@dystonia-foundation.org.
News You Can Use
Merz Pharmaceuticals introduces two new programs to provide patients with
financial assistance for their treatment with Xeomin®,
a botulinum toxin type, approved by the FDA for the treatment of adults with
cervical dystonia, and blepharospasm.
The Xeomin Patient Co-payment Program offers eligible patients assistance for
their actual out-of-pocket costs for therapeutic treatment with Xeomin. Merz
also announced the launch of the Xeomin Patient Assistance Program, a program
to provide Xeomin at no cost to eligible patients who are experiencing
financial hardship and who do not have third party drug coverage. [4]Click here
if you would like to learn more about the programs and the enrollment process.
University of Alabama at Birmingham
Dystonia Symposium
April 8th is your chance to talk one-on-one with some of the most prominent,
experienced medical & therapeutic practioneers in Alabama for dystonia
patients. Sponsored by the Dystonia Support Group of Alabama. Space is limited
so hurry up and register. [5]To learn more about this symposim click here.
Dystonia Educational Forum
Please join us for this special meeting that will take place in Seattle, WA on
Friday, April 29, 2011. Presenting the latest developments in living with
dystonia. Some of the topics include, current treatments, Deep Brain
Stimulation and exercise. Registration is required. [6]Fore more details and to
register, click here.
Faces of Dystonia
Submissions for the Faces of Dystonia continue to roll in and soon we will
share them with you. Want to be a Face of Dystonia? Don't wait, submit your
story today.
The DMRF celebrates members of the dystonia comunity and invites everyone to
participate in this special project.[7] Click here to find out more information
about the Faces of Dystonia.
Events on the Move
Come out and join us for some of our upcoming events. You're sure to have a
good time in support of a great cause. The DMRF is fortunate to have dedicated
volunteers around the country who work tirelessly to promote awareness and
raise funds for research. The DMRF deeply appreciates every volunteer and every
effort.
Julie Zaia is participating in the Shamrock Marathon in Virginia Beach on March
20th in honor of her younger sister, Stephanie who has dystonia. [8]Click here
to learn more about Julie and why you should support her.
Dine for Dystonia, share a meal out with friends and feel good about helping
those with dystonia. On March 21st support Friends of Guido and enjoy a great
meal at Sal & Joe's restaurant in Maple
Shade, NJ. [9]Click here to learn more.
Gigi Kenney is only 6 years old but that is not stopping her. On March 26th she
will be running her first race at the Oakland Running Festival in Oakland, CA.
Gigi is raising awareness in honor of her mom who has dystonia. [10]If you
would like to learn more about Gigi and how you can support her click here.
On March 31st DMRF Ambassador and American Academy of Neurology award winner,
Billy McLaughlin, performs this solo acoustic guitar concert as part of the
performing arts at the Neurosciences Institute series in San Diego, CA. [11]To
register for the concert click here.
Walk with Fire, an art show featuring women metal sculpture artists taking
place on April 8th in Omaha, NE. This 2nd Annual art show will feature an
auction of donated pieces by each participating artist. [12]Learn more on why
this theme was the inspiration of the art show.
Return to Margaritaville in Danvers, MA on April 15th. A freedom to move dance
and fundraiser sponsored by The Friends of Paula Gates to benefit the Dystonia
Medical Research Foundation (DMRF).
[13]Click here for further details.
On April 30th, Krista Richter will be participating in the Leona Divide 50 Mile
in Lake Hughes, CA. [14]Learn more about Krista's story and why you should
support her.
Please join the Nathan Calvert Family for the 2nd Annual Yard Sale that will be
taking place on May 14th & 15th in North Caldwell, NJ.
Why wait? Register today!
Are you interested in becoming a member of the Dystance4Dystonia team? Have you
always wanted to participate in a run? Consider becoming a member of our team
for any of the runs below.
April 10th - [15]Bank of America Shamrock Shuffle
June 5th - [16]San Diego Marathon
September 18th - [17]Philadelphia Marathon
Contact us today and find out how you can support the work of the Dystonia
Medical Research Foundation (DMRF). For more information, please email
[18]Tammy Reed.
Upcoming Support Group Meetings
3/18 - [19]Dystonia Support Group of Spokane (WA)
3/19 - [20]Dystonia Support & Advocacy Group of [21]San Diego County (CA)
3/26 - [22]Greater Dallas/Dysphonia (TX)
4/02 - [23]Eastern Iowa/Western Illinois (IA)
4/10 - [24]Chicago Chapter (IL)
4/23 - [25]Tampa Bay Dystonia (FL)
4/26 - [26]The University of Miami South Florida Dystonia (FL)
5/15 - [27]Portland & SW Washington (OR)
5/21 - [28]North Bay (CA)
Tell us how we are doing. We would love to hear your thoughts about the
newsletter. Email us today at[29] enewsletter@dystonia-foundation.org
Would you like to access the newsletter 24/7? [30]dmrfenews.blogspot.com
Would you like to receive updates by text message?
Text DYSTONIA to 90999
[36]Go the Dystance4Dystonia and run for those who can't!
[37]Host a Dogs4Dystonia Dog Walk in your community today!
[38]Are you an American Express card holder looking for additional ways to
support the work of the DMRF?
* Please see Terms & Conditions below
[39]Are you a federal government or military employee looking to support the
work of the DMRF?
Dystonia Medical Research Foundation One East Wacker Drive, Suite 2810,
Chicago, IL 60601-1905
Phone (312) 755-0198 Toll Free (800) 377-3978 Fax (312) 803-0138
Web www.dystonia-foundation.org Email dystonia@dystonia-foundation.org
* Terms and Conditions for the Membership Rewards program apply. Visit
[40]membershiprewards.com/terms for more information.
Dollar donations are tax deductible the full extent allowed by law however,
donations of Membership Rewards points are not tax deductible.Please note:
American Express will deduct a transaction fee of 2.25% from the donation to
cover processing costs. The charities will receive your donation amount, minus
the 2.25% American Express processing fee, from our partner JustGive. This
transaction fee is similar to or less than the processing fee the charity would
pay if you were to charge your donation with your American Express® Card
through any other means (i.e., over the phone to the charity, through the
charity's website, etc.). This transaction fee only applies to monetary
donations placed on your American Express® Card and not to donations that are
made via the redemption of Membership Rewards points. Dollar donations are tax
deductible the full extent allowed by law however, donations of Membership
Rewards points are not tax deductible.Please consult your tax advisor on the
deductibility of a donation of Membership Rewards points.
References
1. mailto:enewsletter@dystonia-foundation.org
2. http://dystonia-advocacy.org/advocacy-day-signup/
3. mailto:dchristiansen@dystonia-foundation.org?subject=2011%20Advocacy%20Day
4. http://www.dystonia-foundation.org/pages/merz_pharmaceuticals_introduces_programs_to_provide_patients_with_financial_assistance_for_xeomin/619.php
5. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=193&Itemid=89&year=2011&month=04&day=08&title=university-of-alabama-at-birmingham-dystonia-symposium&uid=72b6b6379a1d345bde6e2ce1bd4e53a7
6. http://www.dmrfevents.org/event.php?439945
7. http://www.dystonia-foundation.org/pages/faces/611.php
8. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=182&Itemid=89&year=2011&month=03&day=20&title=julie-zaia-shamrock-marathon&uid=74cce0c265765e6182850fd0f3e36b04
9. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=187&Itemid=89&year=2011&month=03&day=21&title=dine-for-dystonia&uid=bdb30ffcd5e3808bebfbdb2d75f25590
10. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalevent.detail&evid=169&Itemid=89&year=2011&month=03&day=26
11. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=181&Itemid=89&year=2011&month=03&day=31&title=the-neurosciences-institute-auditorium-solo-guitar-performance-featuring-billy-mclaughlin&uid=49b1dd624e3785715287c9c325d1fd29
12. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=196&Itemid=89&year=2011&month=04&day=08&title=women-who-weld-omaha-ne&uid=48ee24e4dd8a5c3d70c78eec082cbd02
13. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=179&Itemid=89&year=2011&month=04&day=15&title=return-to-margaritaville&uid=cebbb5b12ea9d09a26346f15664fff6e
14. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=192&Itemid=89&year=2011&month=04&day=30&title=krista-richter-leona-divide-50-mile&uid=08cae2c41fc7b46ea4d5cd673d144bf2
15. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=166&Itemid=89&year=2011&month=04&day=10&title=bank-of-america-shamrock-shuffle-2011&uid=7eab4757db66442cdd04098e15ec63e4
16. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=167&Itemid=89&year=2011&month=06&day=05&title=san-diego-marathon&uid=4d2198a9f021376d8fc70453dccf350b
17. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=168&Itemid=89&year=2011&month=09&day=18&title=philadelphia-marathon&uid=1fea27a6717d0d81ff6e8d2e78b6dfd5
18. mailto:treed@dystonia-foundation.org?subject=Dystance4Dystonia
19. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=178&Itemid=89&year=2011&month=03&day=18&title=dystonia-support-group-of-spokane&uid=24dc2bbe86749a8fcee7ab482c542f14
20. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=194&Itemid=89&year=2011&month=03&day=19&title=dystonia-support-a-advocacy-group-of-san-diego-county&uid=462db88fe93dc28c9a882e7472136269
21. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=194&Itemid=89&year=2011&month=03&day=19&title=dystonia-support-a-advocacy-group-of-san-diego-county&uid=462db88fe93dc28c9a882e7472136269
22. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=197&Itemid=89&year=2011&month=03&day=26&title=greater-dallas-dystoniadysphonia-support-group&uid=58d8d7878271fa727a4a80f3a4859df0
23. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=195&Itemid=89&year=2011&month=04&day=02&title=eastern-iowawestern-illinois-dystonia-support-group&uid=0abf0fa55684b6d818b04babd74348f5
24. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=171&Itemid=89&year=2011&month=04&day=10&title=chicago-chapter-sg-meeting&uid=290cf7bf36148940acc5b02e7dd438e1
25. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=183&Itemid=89&year=2011&month=04&day=23&title=tampa-bay-dystonia-sg-meeting&uid=51cc25cb3545b4bc2aad28a3ba960d0c
26. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=201&Itemid=89&year=2011&month=04&day=26&title=the-university-of-miami-south-florida-dystonia-support-group&uid=f77ffe00b73db7e88f95a140e725e388
27. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=189&Itemid=89&year=2011&month=05&day=15&title=portland-a-sw-washington-dystonia-sg-meeting&uid=160c6ab0075e719ffdc867c726a5fff2
28. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=156&Itemid=89&year=2011&month=05&day=21&title=north-bay-dystonia-sg-meeting&uid=7521020e6a567162de21e822baeedc9e
29. mailto:enewsletter@dystonia-foundation.org?subject=Thoughts%20about%20eNews
30. http://dmrfenews.blogspot.com/
31. http://www.myspace.com/thedmrf
32. http://www.youtube.com/user/cemiwire
33. http://www.facebook.com/pages/Dystonia-Medical-Research-Foundation/46820882711
34. http://twitter.com/dmrf
35. http://thedmrf.ning.com/
36. http://dystance4dystonia.org/joomla/index.php?option=com_content&view=article&id=47&Itemid=55
37. http://dystance4dystonia.org/joomla/index.php?option=com_content&view=article&id=46&Itemid=54
38. https://amex.justgive.org/nonprofits/donate.jsp?ein=95-3378526
39. http://www.dystonia-foundation.org/pages/combined_federal_campaign/595.php
40. https://secure.cmax.americanexpress.com/Internet/US/Travel/CTN/Components/CTN_ECOMM_TSO_SERVICE_OFFERED/Terms%20and%20Conditions_112443.html
March 2011
To ensure delivery, please add [1]enewsletter@dystonia-foundation.org to your
address book.
Join us for the 2011 Dystonia Advocacy Day
The Dystonia Medical Research Foundation, a member of the Dystonia Advocacy
Network (DAN) is pleased to announce 2011 Capitol Hill Advocacy Day will be
held on Tuesday, May 10th and Wednesday, May 11th at the Embassy Suites DC
Convention Center in Washington, DC. This annual event brings dystonia
advocates from across the country together to work in support of a legislative
agenda that focuses on bolstering dystonia research and improving patient
care.
The May 10th portion of the event will feature comprehensive advocacy training
sessions, a review of our legislative priorities, and a networking dinner. On
May 11th, advocates will travel to Capitol Hill to meet with the offices of
their elected officials and use their stories to enlist congressional support.
If you would like to register for advocacy day, please visit the registration
page on the DAN website: [2]http://dystonia-advocacy.org/advocacy-day-signup/.
If you would like additional information about this event, please contact
DMRF’s Grassroots Coordinator, Dane Christiansen, at
[3]dchristiansen@dystonia-foundation.org.
News You Can Use
Merz Pharmaceuticals introduces two new programs to provide patients with
financial assistance for their treatment with Xeomin®,
a botulinum toxin type, approved by the FDA for the treatment of adults with
cervical dystonia, and blepharospasm.
The Xeomin Patient Co-payment Program offers eligible patients assistance for
their actual out-of-pocket costs for therapeutic treatment with Xeomin. Merz
also announced the launch of the Xeomin Patient Assistance Program, a program
to provide Xeomin at no cost to eligible patients who are experiencing
financial hardship and who do not have third party drug coverage. [4]Click here
if you would like to learn more about the programs and the enrollment process.
University of Alabama at Birmingham
Dystonia Symposium
April 8th is your chance to talk one-on-one with some of the most prominent,
experienced medical & therapeutic practioneers in Alabama for dystonia
patients. Sponsored by the Dystonia Support Group of Alabama. Space is limited
so hurry up and register. [5]To learn more about this symposim click here.
Dystonia Educational Forum
Please join us for this special meeting that will take place in Seattle, WA on
Friday, April 29, 2011. Presenting the latest developments in living with
dystonia. Some of the topics include, current treatments, Deep Brain
Stimulation and exercise. Registration is required. [6]Fore more details and to
register, click here.
Faces of Dystonia
Submissions for the Faces of Dystonia continue to roll in and soon we will
share them with you. Want to be a Face of Dystonia? Don't wait, submit your
story today.
The DMRF celebrates members of the dystonia comunity and invites everyone to
participate in this special project.[7] Click here to find out more information
about the Faces of Dystonia.
Events on the Move
Come out and join us for some of our upcoming events. You're sure to have a
good time in support of a great cause. The DMRF is fortunate to have dedicated
volunteers around the country who work tirelessly to promote awareness and
raise funds for research. The DMRF deeply appreciates every volunteer and every
effort.
Julie Zaia is participating in the Shamrock Marathon in Virginia Beach on March
20th in honor of her younger sister, Stephanie who has dystonia. [8]Click here
to learn more about Julie and why you should support her.
Dine for Dystonia, share a meal out with friends and feel good about helping
those with dystonia. On March 21st support Friends of Guido and enjoy a great
meal at Sal & Joe's restaurant in Maple
Shade, NJ. [9]Click here to learn more.
Gigi Kenney is only 6 years old but that is not stopping her. On March 26th she
will be running her first race at the Oakland Running Festival in Oakland, CA.
Gigi is raising awareness in honor of her mom who has dystonia. [10]If you
would like to learn more about Gigi and how you can support her click here.
On March 31st DMRF Ambassador and American Academy of Neurology award winner,
Billy McLaughlin, performs this solo acoustic guitar concert as part of the
performing arts at the Neurosciences Institute series in San Diego, CA. [11]To
register for the concert click here.
Walk with Fire, an art show featuring women metal sculpture artists taking
place on April 8th in Omaha, NE. This 2nd Annual art show will feature an
auction of donated pieces by each participating artist. [12]Learn more on why
this theme was the inspiration of the art show.
Return to Margaritaville in Danvers, MA on April 15th. A freedom to move dance
and fundraiser sponsored by The Friends of Paula Gates to benefit the Dystonia
Medical Research Foundation (DMRF).
[13]Click here for further details.
On April 30th, Krista Richter will be participating in the Leona Divide 50 Mile
in Lake Hughes, CA. [14]Learn more about Krista's story and why you should
support her.
Please join the Nathan Calvert Family for the 2nd Annual Yard Sale that will be
taking place on May 14th & 15th in North Caldwell, NJ.
Why wait? Register today!
Are you interested in becoming a member of the Dystance4Dystonia team? Have you
always wanted to participate in a run? Consider becoming a member of our team
for any of the runs below.
April 10th - [15]Bank of America Shamrock Shuffle
June 5th - [16]San Diego Marathon
September 18th - [17]Philadelphia Marathon
Contact us today and find out how you can support the work of the Dystonia
Medical Research Foundation (DMRF). For more information, please email
[18]Tammy Reed.
Upcoming Support Group Meetings
3/18 - [19]Dystonia Support Group of Spokane (WA)
3/19 - [20]Dystonia Support & Advocacy Group of [21]San Diego County (CA)
3/26 - [22]Greater Dallas/Dysphonia (TX)
4/02 - [23]Eastern Iowa/Western Illinois (IA)
4/10 - [24]Chicago Chapter (IL)
4/23 - [25]Tampa Bay Dystonia (FL)
4/26 - [26]The University of Miami South Florida Dystonia (FL)
5/15 - [27]Portland & SW Washington (OR)
5/21 - [28]North Bay (CA)
Tell us how we are doing. We would love to hear your thoughts about the
newsletter. Email us today at[29] enewsletter@dystonia-foundation.org
Would you like to access the newsletter 24/7? [30]dmrfenews.blogspot.com
Would you like to receive updates by text message?
Text DYSTONIA to 90999
[36]Go the Dystance4Dystonia and run for those who can't!
[37]Host a Dogs4Dystonia Dog Walk in your community today!
[38]Are you an American Express card holder looking for additional ways to
support the work of the DMRF?
* Please see Terms & Conditions below
[39]Are you a federal government or military employee looking to support the
work of the DMRF?
Dystonia Medical Research Foundation One East Wacker Drive, Suite 2810,
Chicago, IL 60601-1905
Phone (312) 755-0198 Toll Free (800) 377-3978 Fax (312) 803-0138
Web www.dystonia-foundation.org Email dystonia@dystonia-foundation.org
* Terms and Conditions for the Membership Rewards program apply. Visit
[40]membershiprewards.com/terms for more information.
Dollar donations are tax deductible the full extent allowed by law however,
donations of Membership Rewards points are not tax deductible.Please note:
American Express will deduct a transaction fee of 2.25% from the donation to
cover processing costs. The charities will receive your donation amount, minus
the 2.25% American Express processing fee, from our partner JustGive. This
transaction fee is similar to or less than the processing fee the charity would
pay if you were to charge your donation with your American Express® Card
through any other means (i.e., over the phone to the charity, through the
charity's website, etc.). This transaction fee only applies to monetary
donations placed on your American Express® Card and not to donations that are
made via the redemption of Membership Rewards points. Dollar donations are tax
deductible the full extent allowed by law however, donations of Membership
Rewards points are not tax deductible.Please consult your tax advisor on the
deductibility of a donation of Membership Rewards points.
References
1. mailto:enewsletter@dystonia-foundation.org
2. http://dystonia-advocacy.org/advocacy-day-signup/
3. mailto:dchristiansen@dystonia-foundation.org?subject=2011%20Advocacy%20Day
4. http://www.dystonia-foundation.org/pages/merz_pharmaceuticals_introduces_programs_to_provide_patients_with_financial_assistance_for_xeomin/619.php
5. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=193&Itemid=89&year=2011&month=04&day=08&title=university-of-alabama-at-birmingham-dystonia-symposium&uid=72b6b6379a1d345bde6e2ce1bd4e53a7
6. http://www.dmrfevents.org/event.php?439945
7. http://www.dystonia-foundation.org/pages/faces/611.php
8. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=182&Itemid=89&year=2011&month=03&day=20&title=julie-zaia-shamrock-marathon&uid=74cce0c265765e6182850fd0f3e36b04
9. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=187&Itemid=89&year=2011&month=03&day=21&title=dine-for-dystonia&uid=bdb30ffcd5e3808bebfbdb2d75f25590
10. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalevent.detail&evid=169&Itemid=89&year=2011&month=03&day=26
11. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=181&Itemid=89&year=2011&month=03&day=31&title=the-neurosciences-institute-auditorium-solo-guitar-performance-featuring-billy-mclaughlin&uid=49b1dd624e3785715287c9c325d1fd29
12. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=196&Itemid=89&year=2011&month=04&day=08&title=women-who-weld-omaha-ne&uid=48ee24e4dd8a5c3d70c78eec082cbd02
13. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=179&Itemid=89&year=2011&month=04&day=15&title=return-to-margaritaville&uid=cebbb5b12ea9d09a26346f15664fff6e
14. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=192&Itemid=89&year=2011&month=04&day=30&title=krista-richter-leona-divide-50-mile&uid=08cae2c41fc7b46ea4d5cd673d144bf2
15. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=166&Itemid=89&year=2011&month=04&day=10&title=bank-of-america-shamrock-shuffle-2011&uid=7eab4757db66442cdd04098e15ec63e4
16. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=167&Itemid=89&year=2011&month=06&day=05&title=san-diego-marathon&uid=4d2198a9f021376d8fc70453dccf350b
17. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=168&Itemid=89&year=2011&month=09&day=18&title=philadelphia-marathon&uid=1fea27a6717d0d81ff6e8d2e78b6dfd5
18. mailto:treed@dystonia-foundation.org?subject=Dystance4Dystonia
19. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=178&Itemid=89&year=2011&month=03&day=18&title=dystonia-support-group-of-spokane&uid=24dc2bbe86749a8fcee7ab482c542f14
20. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=194&Itemid=89&year=2011&month=03&day=19&title=dystonia-support-a-advocacy-group-of-san-diego-county&uid=462db88fe93dc28c9a882e7472136269
21. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=194&Itemid=89&year=2011&month=03&day=19&title=dystonia-support-a-advocacy-group-of-san-diego-county&uid=462db88fe93dc28c9a882e7472136269
22. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=197&Itemid=89&year=2011&month=03&day=26&title=greater-dallas-dystoniadysphonia-support-group&uid=58d8d7878271fa727a4a80f3a4859df0
23. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=195&Itemid=89&year=2011&month=04&day=02&title=eastern-iowawestern-illinois-dystonia-support-group&uid=0abf0fa55684b6d818b04babd74348f5
24. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=171&Itemid=89&year=2011&month=04&day=10&title=chicago-chapter-sg-meeting&uid=290cf7bf36148940acc5b02e7dd438e1
25. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=183&Itemid=89&year=2011&month=04&day=23&title=tampa-bay-dystonia-sg-meeting&uid=51cc25cb3545b4bc2aad28a3ba960d0c
26. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=201&Itemid=89&year=2011&month=04&day=26&title=the-university-of-miami-south-florida-dystonia-support-group&uid=f77ffe00b73db7e88f95a140e725e388
27. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=189&Itemid=89&year=2011&month=05&day=15&title=portland-a-sw-washington-dystonia-sg-meeting&uid=160c6ab0075e719ffdc867c726a5fff2
28. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=156&Itemid=89&year=2011&month=05&day=21&title=north-bay-dystonia-sg-meeting&uid=7521020e6a567162de21e822baeedc9e
29. mailto:enewsletter@dystonia-foundation.org?subject=Thoughts%20about%20eNews
30. http://dmrfenews.blogspot.com/
31. http://www.myspace.com/thedmrf
32. http://www.youtube.com/user/cemiwire
33. http://www.facebook.com/pages/Dystonia-Medical-Research-Foundation/46820882711
34. http://twitter.com/dmrf
35. http://thedmrf.ning.com/
36. http://dystance4dystonia.org/joomla/index.php?option=com_content&view=article&id=47&Itemid=55
37. http://dystance4dystonia.org/joomla/index.php?option=com_content&view=article&id=46&Itemid=54
38. https://amex.justgive.org/nonprofits/donate.jsp?ein=95-3378526
39. http://www.dystonia-foundation.org/pages/combined_federal_campaign/595.php
40. https://secure.cmax.americanexpress.com/Internet/US/Travel/CTN/Components/CTN_ECOMM_TSO_SERVICE_OFFERED/Terms%20and%20Conditions_112443.html
DMRF eNews - February 2011
DMRF eNews
February 2011
To ensure delivery, please add [1]enewsletter@dystonia-foundation.org to your
address book.
This year marks the 100th Anniversary of Dr. Oppentreim's seminal paper
describing dystonia and the 35th Anniversary of the Foundation. Although this
is not something we want to celebrate - we'd much rather have achieved our goal
of a cure and closed our doors years ago - it is appropriate to look back at
the progress we have made.
The DMRF continues to be a leader in the fight for advancing research. We are
working toward that magical day when no one has to suffer from dystonia and we
know research will get us there. Since our founding, the DMRF has provided over
$25 million in support of over 400 research projects. This past year alone, the
DMRF committed to over 2 million to our science program - including a major
initiative to identify new targets that may lead to the development of new
drugs that will expand the limited menue of treatment options available to
those who are suffering.
The DMRF is working with the National Institutes of Health (NIH),
pharmaceutical and biotech companies, and the scientific and medical
communities to increase the breadth and depth of dystonia related research. We
continue to attract young, bright professional who are dedicated themselves to
uncovering the mysteries of this disease.
We are grateful to everyone in the dystonia community who has worked tirelessly
over the years to provide support and to promote dystonia awareness and
education, and raise funds for research.
Brain Donor Program
The DMRF is pleased to announce that it is now working with the Harvard Brain
Tissue Resource Center at McLean Hospital in Massachusetts (HBTRC) to establish
a private dystonia tissue collection. In seeking a new treatment and ultimately
a cure for dystonia, the Foundation believes that this new partnership will
more effectively assist investigators in their dystonia research.
Giving scientists the opportunity to study dystonia tissue is a crucial step
toward developing improved therapies and a cure for dystonia in all its forms.
Brain donation provides you the unique opportunity to contribute to the field
of dystonia research in a practical way that will assist researchers. Consider
becoming a brain donor and discuss this possibility with your family members.
Your body contains clues vital to solving the puzzle of dystonia. [2]Click here
to learn more.
Seeking volunteers with Cervical Dystonia
Ipsen, manufacturer of Dysport™ (also known in the US as abobotulinumtoxin A),
is working with physicians to conduct a study to determine typical patient
response to this treatment for adults with cervical dystonia. The study,
called ANCHOR - CD (AbobotulinumtoxinA Neurotoxin Clinical & Health Economics
Outcomes Registry in Cervical Dystonia) looks to recruit 400 patients who are
being treated with Dysport and is being conducted through physicians' practices
across the country.
[3]For more information please click here.
Investigators at Mount Sinai School of Medicine are recruiting patients for
three focal dystonia studies:
I. Focal Primary Dystonia: Writer's Cramp, Cervical Dystonia, Blepharospasm,
Spasmodic Dysphonia - The purpose of this experimental study is to investigate
changes in the brain of patients with focal dystonias.
II. Writer’s Cramp – The purpose of this experimental study is to investigate
brain function in people with writer’s cramp (hand dystonia).
III. Spasmodic Dysphonia - The purpose of this study is to investigate the
effect of a novel drug, sodium oxybate, on symptoms and brain changes in
patients with spasmodic dysphonia and essential tremor of voice.
[4]Click here for more information.
For additional information on any of these studies, please call:
(212) 241-0656. Ask to speak to Dr. Kristina Simonyan.
Faces of Dystonia
Do you want to be a Face of Dystonia? Help the DMRF create a mosaic of faces
and stories from the dystonia community by sharing your photo and a few words
about your dystonia experience. Submissions will be collected throughout the
year and posted in a special section of the DMRF webiste.
The DMRF celebrates members of the dystonia comunity and invites everyone to
participate in this special project.[5] Click here to find out more information
about the Faces of Dystonia.
Guitar Performance featuring Billy McLaughlin
The Neurosciences Institute Auditorium Solo Guitar Performance featuring Billy
McLaughling will take place on March 31, 2011 (Billy performs this solo
acoustic guitar conert as part of the performing arts at the Neurosciences
Institute series). [6]Click here for more information about the concert.
If you missed it....
On January 26, 2011, DMRF Science Officer Jan Teller, MA, PhD provided the
latest information on the field of dystonia research and the DMRF Science
Program. This informative webinar provided an overview of the most promising
areas in dystonia research and what to watch this year for progress. If you
would like to view and listen to the webinar recording, please [7]click here.
On February 9, 2011 DMRF member Alex John appeared on a special episode of "The
Doctors" TV show. This was her third time on the show and the episode followed
her Deep Brain Stimulation (DBS) surgery. Watch her progress after being
diagnosed with dystonia. If you missed it, [8]click here to check out brief
scenes from the show.
Workplace Campaigns
The DMRF participates in the world's largest and most successful workplace
charity program, the Combined Federal Campaign (CFC). Through the CFC campaign,
government employees are able to make regular donations in support of the DMRF
through payroll deductions.
If you are a federal government or military employee and would like to support
the work of the DMRF, please take part in the Combined Federal Campaign by
entering the DMRF's name.
Don't know if your agency is taking part in the CFC program?
Contact your Human Resources Department to find out more.
Don't wait - Registration is Now Open!
The Bank of America Shamrock Shuffle is now open for registration. The 8K
course will take place in Chicago on April 10, 2011. Why wait, [9]register
today and join the DMRF in helping spread awareness and raise funds for
dystonia.
The Bank of America Chicago Marathon taking place on October 9, 2011, is open
for registration as well. Don't delay, registration is filling up fast,
[10]register today and support the DMRF.
If you have any questions about the Dystance4Dystonia program, please contact
Tammy Reed at [11]treed@dystonia-foundation.org.
Coming Soon...
Come out and join us for some of our upcoming events. The DMRF is fortunate and
very grateful to have dedicated volunteers around the country who work
tirelessly to promote awareness and fundraise for research. The following are
some of the events coming to you soon.
3/08 Fat Tuesday Dinner - Omaha, NE (Sally Presby)
3/20 Shamrock Marathon - Virginia Beach, VA (Julie Zaia)
4/8-9 Women Who Weld - Omaha, NE (Melinda Eames)
4/10 Bank of America Shamrock Shuffle - Chicago, IL
4/15 Return to Margaritaville - Danvers, MA (Paula Gates)
4/30 Leona Divide 50 Mile - Lake Hughes, CA (Krista Richter)
5/14-15 Nathan Calvert Yard Sale - N. Caldwell, NJ (Sandra Calvert Nathans)
Tell us how we are doing. We would love to hear your thoughts about the
newsletter. Email us today at[12] enewsletter@dystonia-foundation.org
Would you like to access the newsletter 24/7? [13]dmrfenews.blogspot.com
Would you like to receive updates by text message?
Text DYSTONIA to 90999
Coming Soon...
[19]Go the Dystance4Dystonia and run for those who can't!
Upcoming Events
3/05 [20]Rhode Island Dystonia SG
3/06 [21]Greater Washington DC SG
3/18 [22]Dystonia SG of Spokane
4/10 [23]Chicago Chapter SG
[24]Bank of America Shamrock Shuffle
4/15 [25]Return To Margaritaville
5/21 [26]North Bay Dystonia SG
[27]Host a Dogs4Dystonia Dog Walk in your community today!
[28]Are you an American Express card holder looking for additional ways to
support the work of the DMRF?
* Please see Terms & Conditions below
[29]Are you a federal government or military employee looking to support the
work of the DMRF?
Dystonia Medical Research Foundation One East Wacker Drive, Suite 2810,
Chicago, IL 60601-1905
Phone (312) 755-0198 Toll Free (800) 377-3978 Fax (312) 803-0138
Web www.dystonia-foundation.org Email dystonia@dystonia-foundation.org
* Terms and Conditions for the Membership Rewards program apply. Visit
[30]membershiprewards.com/terms for more information.
Dollar donations are tax deductible the full extent allowed by law however,
donations of Membership Rewards points are not tax deductible.Please note:
American Express will deduct a transaction fee of 2.25% from the donation to
cover processing costs. The charities will receive your donation amount, minus
the 2.25% American Express processing fee, from our partner JustGive. This
transaction fee is similar to or less than the processing fee the charity would
pay if you were to charge your donation with your American Express® Card
through any other means (i.e., over the phone to the charity, through the
charity's website, etc.). This transaction fee only applies to monetary
donations placed on your American Express® Card and not to donations that are
made via the redemption of Membership Rewards points. Dollar donations are tax
deductible the full extent allowed by law however, donations of Membership
Rewards points are not tax deductible.Please consult your tax advisor on the
deductibility of a donation of Membership Rewards points.
References
1. mailto:enewsletter@dystonia-foundation.org
2. http://www.dystonia-foundation.org/pages/become_a_brain_donor/162.php
3. http://www.dystonia-foundation.org/pages/volunteers_with_cervical_dystonia_needed_for_study/614.php
4. http://www.dystonia-foundation.org/pages/researchers_need_volunteers_for_dystonia_studies/616.php
5. http://www.dystonia-foundation.org/pages/faces/611.php
6. http://www.dmrfevents.org/event.php?475078
7. http://www.dystonia-foundation.org/pages/dystonia_research_update_webinar_01_26_11/613.php
8. http://thedoctorstv.com/main/show_page/700
9. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=166&Itemid=89&year=2011&month=04&day=10&title=bank-of-america-shamrock-shuffle-2011&uid=7eab4757db66442cdd04098e15ec63e4&catids=37
10. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=164&Itemid=89&year=2011&month=10&day=09&title=bank-of-america-chicago-marathon-2011&uid=d3d3cace7935275bebc1ad13df9ccdf8
11. mailto:treed@dystonia-foundation.org?subject=Bank%20of%20America%20Shamrock%20Shuffle
12. mailto:enewsletter@dystonia-foundation.org?subject=Thoughts%20about%20eNews
13. http://dmrfenews.blogspot.com/
14. http://www.myspace.com/thedmrf
15. http://www.youtube.com/user/cemiwire
16. http://www.facebook.com/pages/Dystonia-Medical-Research-Foundation/46820882711
17. http://twitter.com/dmrf
18. http://thedmrf.ning.com/
19. http://dystance4dystonia.org/joomla/index.php?option=com_content&view=article&id=47&Itemid=55
20. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=175&Itemid=89&year=2011&month=03&day=05&title=rhode-island-dystonia-sg-meeting&uid=c8d49a8769865fea7b1c212b21613ffd
21. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=174&Itemid=89&year=2011&month=03&day=06&title=greater-washington-dc-dystonia-sg-meeting&uid=b1e7747ecec43fc07af63eeaa8bfb4fa
22. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=178&Itemid=89&year=2011&month=03&day=18&title=dystonia-support-group-of-spokane&uid=24dc2bbe86749a8fcee7ab482c542f14
23. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=171&Itemid=89&year=2011&month=04&day=10&title=chicago-chapter-sg-meeting&uid=290cf7bf36148940acc5b02e7dd438e1
24. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=166&Itemid=89&year=2011&month=04&day=10&title=bank-of-america-shamrock-shuffle-2011&uid=7eab4757db66442cdd04098e15ec63e4&catids=37
25. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=179&Itemid=89&year=2011&month=04&day=15&title=return-to-margaritaville&uid=cebbb5b12ea9d09a26346f15664fff6e
26. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=156&Itemid=89&year=2011&month=05&day=21&title=north-bay-dystonia-sg-meeting&uid=7521020e6a567162de21e822baeedc9e
27. http://dystance4dystonia.org/joomla/index.php?option=com_content&view=article&id=46&Itemid=54
28. https://amex.justgive.org/nonprofits/donate.jsp?ein=95-3378526
29. http://www.dystonia-foundation.org/pages/combined_federal_campaign/595.php
30. https://secure.cmax.americanexpress.com/Internet/US/Travel/CTN/Components/CTN_ECOMM_TSO_SERVICE_OFFERED/Terms%20and%20Conditions_112443.html
February 2011
To ensure delivery, please add [1]enewsletter@dystonia-foundation.org to your
address book.
This year marks the 100th Anniversary of Dr. Oppentreim's seminal paper
describing dystonia and the 35th Anniversary of the Foundation. Although this
is not something we want to celebrate - we'd much rather have achieved our goal
of a cure and closed our doors years ago - it is appropriate to look back at
the progress we have made.
The DMRF continues to be a leader in the fight for advancing research. We are
working toward that magical day when no one has to suffer from dystonia and we
know research will get us there. Since our founding, the DMRF has provided over
$25 million in support of over 400 research projects. This past year alone, the
DMRF committed to over 2 million to our science program - including a major
initiative to identify new targets that may lead to the development of new
drugs that will expand the limited menue of treatment options available to
those who are suffering.
The DMRF is working with the National Institutes of Health (NIH),
pharmaceutical and biotech companies, and the scientific and medical
communities to increase the breadth and depth of dystonia related research. We
continue to attract young, bright professional who are dedicated themselves to
uncovering the mysteries of this disease.
We are grateful to everyone in the dystonia community who has worked tirelessly
over the years to provide support and to promote dystonia awareness and
education, and raise funds for research.
Brain Donor Program
The DMRF is pleased to announce that it is now working with the Harvard Brain
Tissue Resource Center at McLean Hospital in Massachusetts (HBTRC) to establish
a private dystonia tissue collection. In seeking a new treatment and ultimately
a cure for dystonia, the Foundation believes that this new partnership will
more effectively assist investigators in their dystonia research.
Giving scientists the opportunity to study dystonia tissue is a crucial step
toward developing improved therapies and a cure for dystonia in all its forms.
Brain donation provides you the unique opportunity to contribute to the field
of dystonia research in a practical way that will assist researchers. Consider
becoming a brain donor and discuss this possibility with your family members.
Your body contains clues vital to solving the puzzle of dystonia. [2]Click here
to learn more.
Seeking volunteers with Cervical Dystonia
Ipsen, manufacturer of Dysport™ (also known in the US as abobotulinumtoxin A),
is working with physicians to conduct a study to determine typical patient
response to this treatment for adults with cervical dystonia. The study,
called ANCHOR - CD (AbobotulinumtoxinA Neurotoxin Clinical & Health Economics
Outcomes Registry in Cervical Dystonia) looks to recruit 400 patients who are
being treated with Dysport and is being conducted through physicians' practices
across the country.
[3]For more information please click here.
Investigators at Mount Sinai School of Medicine are recruiting patients for
three focal dystonia studies:
I. Focal Primary Dystonia: Writer's Cramp, Cervical Dystonia, Blepharospasm,
Spasmodic Dysphonia - The purpose of this experimental study is to investigate
changes in the brain of patients with focal dystonias.
II. Writer’s Cramp – The purpose of this experimental study is to investigate
brain function in people with writer’s cramp (hand dystonia).
III. Spasmodic Dysphonia - The purpose of this study is to investigate the
effect of a novel drug, sodium oxybate, on symptoms and brain changes in
patients with spasmodic dysphonia and essential tremor of voice.
[4]Click here for more information.
For additional information on any of these studies, please call:
(212) 241-0656. Ask to speak to Dr. Kristina Simonyan.
Faces of Dystonia
Do you want to be a Face of Dystonia? Help the DMRF create a mosaic of faces
and stories from the dystonia community by sharing your photo and a few words
about your dystonia experience. Submissions will be collected throughout the
year and posted in a special section of the DMRF webiste.
The DMRF celebrates members of the dystonia comunity and invites everyone to
participate in this special project.[5] Click here to find out more information
about the Faces of Dystonia.
Guitar Performance featuring Billy McLaughlin
The Neurosciences Institute Auditorium Solo Guitar Performance featuring Billy
McLaughling will take place on March 31, 2011 (Billy performs this solo
acoustic guitar conert as part of the performing arts at the Neurosciences
Institute series). [6]Click here for more information about the concert.
If you missed it....
On January 26, 2011, DMRF Science Officer Jan Teller, MA, PhD provided the
latest information on the field of dystonia research and the DMRF Science
Program. This informative webinar provided an overview of the most promising
areas in dystonia research and what to watch this year for progress. If you
would like to view and listen to the webinar recording, please [7]click here.
On February 9, 2011 DMRF member Alex John appeared on a special episode of "The
Doctors" TV show. This was her third time on the show and the episode followed
her Deep Brain Stimulation (DBS) surgery. Watch her progress after being
diagnosed with dystonia. If you missed it, [8]click here to check out brief
scenes from the show.
Workplace Campaigns
The DMRF participates in the world's largest and most successful workplace
charity program, the Combined Federal Campaign (CFC). Through the CFC campaign,
government employees are able to make regular donations in support of the DMRF
through payroll deductions.
If you are a federal government or military employee and would like to support
the work of the DMRF, please take part in the Combined Federal Campaign by
entering the DMRF's name.
Don't know if your agency is taking part in the CFC program?
Contact your Human Resources Department to find out more.
Don't wait - Registration is Now Open!
The Bank of America Shamrock Shuffle is now open for registration. The 8K
course will take place in Chicago on April 10, 2011. Why wait, [9]register
today and join the DMRF in helping spread awareness and raise funds for
dystonia.
The Bank of America Chicago Marathon taking place on October 9, 2011, is open
for registration as well. Don't delay, registration is filling up fast,
[10]register today and support the DMRF.
If you have any questions about the Dystance4Dystonia program, please contact
Tammy Reed at [11]treed@dystonia-foundation.org.
Coming Soon...
Come out and join us for some of our upcoming events. The DMRF is fortunate and
very grateful to have dedicated volunteers around the country who work
tirelessly to promote awareness and fundraise for research. The following are
some of the events coming to you soon.
3/08 Fat Tuesday Dinner - Omaha, NE (Sally Presby)
3/20 Shamrock Marathon - Virginia Beach, VA (Julie Zaia)
4/8-9 Women Who Weld - Omaha, NE (Melinda Eames)
4/10 Bank of America Shamrock Shuffle - Chicago, IL
4/15 Return to Margaritaville - Danvers, MA (Paula Gates)
4/30 Leona Divide 50 Mile - Lake Hughes, CA (Krista Richter)
5/14-15 Nathan Calvert Yard Sale - N. Caldwell, NJ (Sandra Calvert Nathans)
Tell us how we are doing. We would love to hear your thoughts about the
newsletter. Email us today at[12] enewsletter@dystonia-foundation.org
Would you like to access the newsletter 24/7? [13]dmrfenews.blogspot.com
Would you like to receive updates by text message?
Text DYSTONIA to 90999
Coming Soon...
[19]Go the Dystance4Dystonia and run for those who can't!
Upcoming Events
3/05 [20]Rhode Island Dystonia SG
3/06 [21]Greater Washington DC SG
3/18 [22]Dystonia SG of Spokane
4/10 [23]Chicago Chapter SG
[24]Bank of America Shamrock Shuffle
4/15 [25]Return To Margaritaville
5/21 [26]North Bay Dystonia SG
[27]Host a Dogs4Dystonia Dog Walk in your community today!
[28]Are you an American Express card holder looking for additional ways to
support the work of the DMRF?
* Please see Terms & Conditions below
[29]Are you a federal government or military employee looking to support the
work of the DMRF?
Dystonia Medical Research Foundation One East Wacker Drive, Suite 2810,
Chicago, IL 60601-1905
Phone (312) 755-0198 Toll Free (800) 377-3978 Fax (312) 803-0138
Web www.dystonia-foundation.org Email dystonia@dystonia-foundation.org
* Terms and Conditions for the Membership Rewards program apply. Visit
[30]membershiprewards.com/terms for more information.
Dollar donations are tax deductible the full extent allowed by law however,
donations of Membership Rewards points are not tax deductible.Please note:
American Express will deduct a transaction fee of 2.25% from the donation to
cover processing costs. The charities will receive your donation amount, minus
the 2.25% American Express processing fee, from our partner JustGive. This
transaction fee is similar to or less than the processing fee the charity would
pay if you were to charge your donation with your American Express® Card
through any other means (i.e., over the phone to the charity, through the
charity's website, etc.). This transaction fee only applies to monetary
donations placed on your American Express® Card and not to donations that are
made via the redemption of Membership Rewards points. Dollar donations are tax
deductible the full extent allowed by law however, donations of Membership
Rewards points are not tax deductible.Please consult your tax advisor on the
deductibility of a donation of Membership Rewards points.
References
1. mailto:enewsletter@dystonia-foundation.org
2. http://www.dystonia-foundation.org/pages/become_a_brain_donor/162.php
3. http://www.dystonia-foundation.org/pages/volunteers_with_cervical_dystonia_needed_for_study/614.php
4. http://www.dystonia-foundation.org/pages/researchers_need_volunteers_for_dystonia_studies/616.php
5. http://www.dystonia-foundation.org/pages/faces/611.php
6. http://www.dmrfevents.org/event.php?475078
7. http://www.dystonia-foundation.org/pages/dystonia_research_update_webinar_01_26_11/613.php
8. http://thedoctorstv.com/main/show_page/700
9. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=166&Itemid=89&year=2011&month=04&day=10&title=bank-of-america-shamrock-shuffle-2011&uid=7eab4757db66442cdd04098e15ec63e4&catids=37
10. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=164&Itemid=89&year=2011&month=10&day=09&title=bank-of-america-chicago-marathon-2011&uid=d3d3cace7935275bebc1ad13df9ccdf8
11. mailto:treed@dystonia-foundation.org?subject=Bank%20of%20America%20Shamrock%20Shuffle
12. mailto:enewsletter@dystonia-foundation.org?subject=Thoughts%20about%20eNews
13. http://dmrfenews.blogspot.com/
14. http://www.myspace.com/thedmrf
15. http://www.youtube.com/user/cemiwire
16. http://www.facebook.com/pages/Dystonia-Medical-Research-Foundation/46820882711
17. http://twitter.com/dmrf
18. http://thedmrf.ning.com/
19. http://dystance4dystonia.org/joomla/index.php?option=com_content&view=article&id=47&Itemid=55
20. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=175&Itemid=89&year=2011&month=03&day=05&title=rhode-island-dystonia-sg-meeting&uid=c8d49a8769865fea7b1c212b21613ffd
21. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=174&Itemid=89&year=2011&month=03&day=06&title=greater-washington-dc-dystonia-sg-meeting&uid=b1e7747ecec43fc07af63eeaa8bfb4fa
22. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=178&Itemid=89&year=2011&month=03&day=18&title=dystonia-support-group-of-spokane&uid=24dc2bbe86749a8fcee7ab482c542f14
23. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=171&Itemid=89&year=2011&month=04&day=10&title=chicago-chapter-sg-meeting&uid=290cf7bf36148940acc5b02e7dd438e1
24. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=166&Itemid=89&year=2011&month=04&day=10&title=bank-of-america-shamrock-shuffle-2011&uid=7eab4757db66442cdd04098e15ec63e4&catids=37
25. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=179&Itemid=89&year=2011&month=04&day=15&title=return-to-margaritaville&uid=cebbb5b12ea9d09a26346f15664fff6e
26. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=156&Itemid=89&year=2011&month=05&day=21&title=north-bay-dystonia-sg-meeting&uid=7521020e6a567162de21e822baeedc9e
27. http://dystance4dystonia.org/joomla/index.php?option=com_content&view=article&id=46&Itemid=54
28. https://amex.justgive.org/nonprofits/donate.jsp?ein=95-3378526
29. http://www.dystonia-foundation.org/pages/combined_federal_campaign/595.php
30. https://secure.cmax.americanexpress.com/Internet/US/Travel/CTN/Components/CTN_ECOMM_TSO_SERVICE_OFFERED/Terms%20and%20Conditions_112443.html
DMRF eNews - January 2011
DMRF eNews
January 2011
To ensure delivery, please add [1]enewsletter@dystonia-foundation.org to your
address book.
Research... the key to end dystonia
Learning more about the state of dystonia is important to the dystonia
community. Please plan on joining DMRF's own Science Officer, Dr. Jan Teller on
Wednesday, January 26th for an informative, understandable webinar on dystonia
research. By sharing this knowledge you can stay informed about this
debilitating disorder. The webinar will provide you with an overview of the
hottest, most promising areas in dystonia research, giving you information on
what to watch this year for progress. Call and log in to hear the latest in
dystonia research.
Advance registration is encouraged.
For more information and to register [2]click here.
2011 Research Grants are in process
The call for research funding applications was successful. The Medical &
Scientific Advisory Council will be reviewing the applications at the annual
meeting next month. Stay tuned for grant announcements to be made in the
spring.
Patients First
The DMRF worked with the Dystonia Advocacy Network (DAN) to ensure that there
is access to all Food and Drug Administration (FDA) approved medications for
dystonia. In August, FDA approved a new botulinum neurotoxin type A, brand name
Xeomin® for the treatment of adults with cervical dystonia and blepharospasm.
However, because of scheduling, the new treatment would not receive a unique
billing code used by doctors to get reimbursed for payment, until January 2012.
A number of DAN volunteers made key Congressional visits in August to raise
awareness of this issue with Centers for Medicare and Medicaid Services (CMS)
and urge the agency to issue a temporary unique billing code for Xeomin®.
Thanks to those efforts a temporary billing code has been issued by CMS,
helping dystonia patients gain access to all FDA approved treatments without
any difficulties when acquiring the treatment.
The Results are in:
"Survey Says: Dystonia, Doctors, & Care".
The DMRF posted an anonymous online survey about how individuals access and
perceive care for dystonia. One of the top three factors in selecting a doctor
is the doctor's expertise in treating dystonia and/or the number of other
dystonia patients treated at the office or center. To find out the complete
results of the survey,
please [3]click here (see pg 7).
Dystonia Advocacy Day
Dystonia Advocacy Day will soon be here. 2011 Advocacy Day is scheduled for
Tuesday, May 10th and Wednesday, May 11th in Washington, DC. If you are
interested in meeting with your Members of Congress to advocate for the
legislative needs of the dystonia community, then plan on joining us and stay
tuned for more information.
Children & Family Dystonia Symposium
Join us on August 19-21 at the Holiday Inn Chicago Mart Plaza in Chicago, IL
for our most anticipated meeting ever, John H. Menkes Children & Family
Dystonia Symposium. This special meeting is for families affected by dystonia.
The symposium brings families together to learn about dystonia, interact with
experts, and find support among one another by providing sessions for children,
teens, siblings, and parents. This event is named in memory and in honor of
John H. Menkes, MD, founding Scientific Director of the Dystonia Medical
Research Foundation. Mark your calendars and stay tuned for more information in
the coming months.
Pay Tribute to a love one...
...by acknowledging that special day in a loved one's life. Send one of these
attractive greeting cards to a family member or a friend for life's special
occasions.
Order a Pack of 5 (same design) or a
Combo Pack (one card for each 6 designs). We also invite you to make a
contribution for a love one and we can send the card for you. To place your
order,[4] click here.
Are you a runner?
Dystance4Dystonia and Dogs4Dystonia are two programs for the DMRF that help
raise much needed funds and awareness around dystonia. Join us as we come
together in communities across the country, support our journey to a cure.
Are you interested in joining our team of runners to participate in the
following races. For more info, contact [5]Tammy Reed.
04/10/11 Bank of America Shamrock Shuffle
06/05/11 San Diego Marathon
09/18/11 Philadelphia Marahon
10/09/11 Bank of America Chicago Marathon
Coming Soon...
Do you want to be a Face of Dystonia. Look for more information about this
exciting new campaign coming soon.
Come out and join us for some of our upcoming events. The DMRF is fortunate to
have dedicated volunteers around the country who work continuously to promote
dystonia awareness and raise funds for research. The DMRF is grateful for every
volunteer and every effort. The following are some of the events coming to you
soon. If you are interested, stay tuned for more information to come your way.
Fat Tuesday Dinner - Omaha, NE
Hands for Dystonia Piano Recital - Vermont
Freedom to Walk - Washington
Women Who Weld - Omaha, NE
Margaritaville Dance & Fundraiser- Danvers, MA
Tell us how we are doing. We would love to hear your thoughts about the
newsletter. Email us today at[6] enewsletter@dystonia-foundation.org
Would you like to access the newsletter 24/7? [7]dmrfenews.blogspot.com
Would you like to receive updates by text message?
Text DYSTONIA to 90999
In This Issue
[13]Research Update Webinar
[14]New Greeting Cards
Upcoming Marathons
Coming Soon...
[15]Go the Dystance4Dystonia and run for those who can't!
Upcoming Events
1/22 [16]San Diego County SG Mtg
[17]Arkansas Dystonia SG Mtg
1/26 [18]Research Update Webinar
2/05 [19]Rhode Island Dystonia &
[20]Neurological Mov. Disorder [21]Support Group Mtg
2/12 [22]North Bay Dystonia SG Mtg
2/13 [23]Chicago Chapter SG Mtg
4/10 Bank of America Shamrock
Shuffle
[24]Host a Dogs4Dystonia Dog Walk in your community today!
[25]Are you an American Express card holder looking for additional ways to
support the work of the DMRF?
* Please see Terms & Conditions below
[26]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
[27]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. https://www2.gotomeeting.com/register/599425898
3. http://www.dystonia-foundation.org/filebin/Morepdfs/DMRF_DialogueWNTR10_FNL2.pdf
4. https://dystonia.securesites.net/dystonia/pages/merchandise/277.php
5. mailto:treed@dystonia-foundation.org?subject=Marathon
6. mailto:enewsletter@dystonia-foundation.org?subject=Thoughts%20about%20eNews
7. http://dmrfenews.blogspot.com/
8. http://www.myspace.com/thedmrf
9. http://www.youtube.com/user/cemiwire
10. http://www.facebook.com/pages/Dystonia-Medical-Research-Foundation/46820882711
11. http://twitter.com/dmrf
12. http://thedmrf.ning.com/
13. https://www2.gotomeeting.com/register/599425898
14. https://dystonia.securesites.net/dystonia/pages/merchandise/277.php
15. http://dystance4dystonia.org/joomla/index.php?option=com_content&view=article&id=47&Itemid=55
16. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=154&Itemid=89&year=2011&month=01&day=22&title=san-diego-county-sg-meeting&uid=f021ce5204edd4fce9b00bc2d39e6f8a
17. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=159&Itemid=89&year=2011&month=01&day=22&title=arkansas-dystonia-sg-meeting&uid=130e6ecf106278be2263df028f7250ed
18. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=142&Itemid=89&year=2011&month=01&day=26&title=research-update-webinar&uid=78253f152274b15e93d87ff4d731a195
19. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=162&Itemid=89&year=2011&month=02&day=05&title=rhode-island-dystonia-a-neurological-movement-disorder-sg&uid=eb9a1d1cdc8d3e7f9f8eac62b10ba577
20. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=162&Itemid=89&year=2011&month=02&day=05&title=rhode-island-dystonia-a-neurological-movement-disorder-sg&uid=eb9a1d1cdc8d3e7f9f8eac62b10ba577
21. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=162&Itemid=89&year=2011&month=02&day=05&title=rhode-island-dystonia-a-neurological-movement-disorder-sg&uid=eb9a1d1cdc8d3e7f9f8eac62b10ba577
22. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=155&Itemid=89&year=2011&month=02&day=12&title=north-bay-dystonia-sg-meeting&uid=1a3e25dd6a062eb21e022a2e55e912b4
23. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=163&Itemid=89&year=2011&month=02&day=13&title=chicago-chapter-sg-meeting&uid=0871948ea2ee408df3a86bd7a1f23f78
24. http://dystance4dystonia.org/joomla/index.php?option=com_content&view=article&id=46&Itemid=54
25. https://amex.justgive.org/nonprofits/donate.jsp?ein=95-3378526
26. http://www.dystonia-foundation.org/pages/combined_federal_campaign/595.php
27. https://secure.cmax.americanexpress.com/Internet/US/Travel/CTN/Components/CTN_ECOMM_TSO_SERVICE_OFFERED/Terms%20and%20Conditions_112443.html
January 2011
To ensure delivery, please add [1]enewsletter@dystonia-foundation.org to your
address book.
Research... the key to end dystonia
Learning more about the state of dystonia is important to the dystonia
community. Please plan on joining DMRF's own Science Officer, Dr. Jan Teller on
Wednesday, January 26th for an informative, understandable webinar on dystonia
research. By sharing this knowledge you can stay informed about this
debilitating disorder. The webinar will provide you with an overview of the
hottest, most promising areas in dystonia research, giving you information on
what to watch this year for progress. Call and log in to hear the latest in
dystonia research.
Advance registration is encouraged.
For more information and to register [2]click here.
2011 Research Grants are in process
The call for research funding applications was successful. The Medical &
Scientific Advisory Council will be reviewing the applications at the annual
meeting next month. Stay tuned for grant announcements to be made in the
spring.
Patients First
The DMRF worked with the Dystonia Advocacy Network (DAN) to ensure that there
is access to all Food and Drug Administration (FDA) approved medications for
dystonia. In August, FDA approved a new botulinum neurotoxin type A, brand name
Xeomin® for the treatment of adults with cervical dystonia and blepharospasm.
However, because of scheduling, the new treatment would not receive a unique
billing code used by doctors to get reimbursed for payment, until January 2012.
A number of DAN volunteers made key Congressional visits in August to raise
awareness of this issue with Centers for Medicare and Medicaid Services (CMS)
and urge the agency to issue a temporary unique billing code for Xeomin®.
Thanks to those efforts a temporary billing code has been issued by CMS,
helping dystonia patients gain access to all FDA approved treatments without
any difficulties when acquiring the treatment.
The Results are in:
"Survey Says: Dystonia, Doctors, & Care".
The DMRF posted an anonymous online survey about how individuals access and
perceive care for dystonia. One of the top three factors in selecting a doctor
is the doctor's expertise in treating dystonia and/or the number of other
dystonia patients treated at the office or center. To find out the complete
results of the survey,
please [3]click here (see pg 7).
Dystonia Advocacy Day
Dystonia Advocacy Day will soon be here. 2011 Advocacy Day is scheduled for
Tuesday, May 10th and Wednesday, May 11th in Washington, DC. If you are
interested in meeting with your Members of Congress to advocate for the
legislative needs of the dystonia community, then plan on joining us and stay
tuned for more information.
Children & Family Dystonia Symposium
Join us on August 19-21 at the Holiday Inn Chicago Mart Plaza in Chicago, IL
for our most anticipated meeting ever, John H. Menkes Children & Family
Dystonia Symposium. This special meeting is for families affected by dystonia.
The symposium brings families together to learn about dystonia, interact with
experts, and find support among one another by providing sessions for children,
teens, siblings, and parents. This event is named in memory and in honor of
John H. Menkes, MD, founding Scientific Director of the Dystonia Medical
Research Foundation. Mark your calendars and stay tuned for more information in
the coming months.
Pay Tribute to a love one...
...by acknowledging that special day in a loved one's life. Send one of these
attractive greeting cards to a family member or a friend for life's special
occasions.
Order a Pack of 5 (same design) or a
Combo Pack (one card for each 6 designs). We also invite you to make a
contribution for a love one and we can send the card for you. To place your
order,[4] click here.
Are you a runner?
Dystance4Dystonia and Dogs4Dystonia are two programs for the DMRF that help
raise much needed funds and awareness around dystonia. Join us as we come
together in communities across the country, support our journey to a cure.
Are you interested in joining our team of runners to participate in the
following races. For more info, contact [5]Tammy Reed.
04/10/11 Bank of America Shamrock Shuffle
06/05/11 San Diego Marathon
09/18/11 Philadelphia Marahon
10/09/11 Bank of America Chicago Marathon
Coming Soon...
Do you want to be a Face of Dystonia. Look for more information about this
exciting new campaign coming soon.
Come out and join us for some of our upcoming events. The DMRF is fortunate to
have dedicated volunteers around the country who work continuously to promote
dystonia awareness and raise funds for research. The DMRF is grateful for every
volunteer and every effort. The following are some of the events coming to you
soon. If you are interested, stay tuned for more information to come your way.
Fat Tuesday Dinner - Omaha, NE
Hands for Dystonia Piano Recital - Vermont
Freedom to Walk - Washington
Women Who Weld - Omaha, NE
Margaritaville Dance & Fundraiser- Danvers, MA
Tell us how we are doing. We would love to hear your thoughts about the
newsletter. Email us today at[6] enewsletter@dystonia-foundation.org
Would you like to access the newsletter 24/7? [7]dmrfenews.blogspot.com
Would you like to receive updates by text message?
Text DYSTONIA to 90999
In This Issue
[13]Research Update Webinar
[14]New Greeting Cards
Upcoming Marathons
Coming Soon...
[15]Go the Dystance4Dystonia and run for those who can't!
Upcoming Events
1/22 [16]San Diego County SG Mtg
[17]Arkansas Dystonia SG Mtg
1/26 [18]Research Update Webinar
2/05 [19]Rhode Island Dystonia &
[20]Neurological Mov. Disorder [21]Support Group Mtg
2/12 [22]North Bay Dystonia SG Mtg
2/13 [23]Chicago Chapter SG Mtg
4/10 Bank of America Shamrock
Shuffle
[24]Host a Dogs4Dystonia Dog Walk in your community today!
[25]Are you an American Express card holder looking for additional ways to
support the work of the DMRF?
* Please see Terms & Conditions below
[26]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
[27]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. https://www2.gotomeeting.com/register/599425898
3. http://www.dystonia-foundation.org/filebin/Morepdfs/DMRF_DialogueWNTR10_FNL2.pdf
4. https://dystonia.securesites.net/dystonia/pages/merchandise/277.php
5. mailto:treed@dystonia-foundation.org?subject=Marathon
6. mailto:enewsletter@dystonia-foundation.org?subject=Thoughts%20about%20eNews
7. http://dmrfenews.blogspot.com/
8. http://www.myspace.com/thedmrf
9. http://www.youtube.com/user/cemiwire
10. http://www.facebook.com/pages/Dystonia-Medical-Research-Foundation/46820882711
11. http://twitter.com/dmrf
12. http://thedmrf.ning.com/
13. https://www2.gotomeeting.com/register/599425898
14. https://dystonia.securesites.net/dystonia/pages/merchandise/277.php
15. http://dystance4dystonia.org/joomla/index.php?option=com_content&view=article&id=47&Itemid=55
16. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=154&Itemid=89&year=2011&month=01&day=22&title=san-diego-county-sg-meeting&uid=f021ce5204edd4fce9b00bc2d39e6f8a
17. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=159&Itemid=89&year=2011&month=01&day=22&title=arkansas-dystonia-sg-meeting&uid=130e6ecf106278be2263df028f7250ed
18. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=142&Itemid=89&year=2011&month=01&day=26&title=research-update-webinar&uid=78253f152274b15e93d87ff4d731a195
19. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=162&Itemid=89&year=2011&month=02&day=05&title=rhode-island-dystonia-a-neurological-movement-disorder-sg&uid=eb9a1d1cdc8d3e7f9f8eac62b10ba577
20. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=162&Itemid=89&year=2011&month=02&day=05&title=rhode-island-dystonia-a-neurological-movement-disorder-sg&uid=eb9a1d1cdc8d3e7f9f8eac62b10ba577
21. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=162&Itemid=89&year=2011&month=02&day=05&title=rhode-island-dystonia-a-neurological-movement-disorder-sg&uid=eb9a1d1cdc8d3e7f9f8eac62b10ba577
22. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=155&Itemid=89&year=2011&month=02&day=12&title=north-bay-dystonia-sg-meeting&uid=1a3e25dd6a062eb21e022a2e55e912b4
23. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=163&Itemid=89&year=2011&month=02&day=13&title=chicago-chapter-sg-meeting&uid=0871948ea2ee408df3a86bd7a1f23f78
24. http://dystance4dystonia.org/joomla/index.php?option=com_content&view=article&id=46&Itemid=54
25. https://amex.justgive.org/nonprofits/donate.jsp?ein=95-3378526
26. http://www.dystonia-foundation.org/pages/combined_federal_campaign/595.php
27. https://secure.cmax.americanexpress.com/Internet/US/Travel/CTN/Components/CTN_ECOMM_TSO_SERVICE_OFFERED/Terms%20and%20Conditions_112443.html
DMRF eNews - December 2010
DMRF eNews
December 2010 - to ensure delivery, please add
[12]enewsletter@dystonia-foundation.org to your address book.
The DMRF is proud of the work carried out in 2010. The impact of our programs
is vast, touching the lives of many, making a difference far beyond what the
eye can see. As we look back on the year, it is evident that we are making
progress in the dystonia community.
Science Highlights
The DMRF funded a number of cutting-edge [13]research projects in 2010. In
addition to our grant and fellowship program which supports young
investigators, we contracted with researchers to fund targeted studies on the
development of animal models and testing of compounds that interact with
specific receptors in the brain. This work will expand our knowledge of
dystonia, leading to the development of new therapies.
Through our partnership with the [14]Dystonia Coalition, we supported the
Coalition’s Career Development Award Program, aimed at funding young clinical
investigators to help them establish careers in dystonia research. We also
continue to provide support to the Coalition as an administrative center and
work closely with the Coalition Primary Investigator, Dr. Buz Jinnah.
DMRF also assisted in the organization of the Dystonia Coalition’s Second
Annual Meeting held in Atlanta, GA. There were more than 100 participants
including healthcare professionals, researchers, pharmaceutical company
representatives, and representatives from dystonia patient organizations. The
meeting was a great success with many of the participants providing positive
feedback about the progress made by the Coalition in its first year.
The [15]DMRF is collaborating with Tyler’s Hope for a Dystonia Cure in funding
the second phase of a ground-breaking research project seeking to identify
proteins whose modification effects the genetic mutation that results in
dystonia. The first phase of the project, funded by DMRF in 2009, resulted in
an assay to test for genes and proteins that interact with torsinA. The second
phase of the project will screen the assay developed during Phase 1. The
outcome of this high risk, high return research could lead to targets for new
dystonia drugs.
As a result of outcomes from the Myoclonus Workshop held in late 2009, the DMRF
is supporting a Myoclonus Research Program over the next three years aimed at
supporting clinical research on [16]Myoclonus dystonia.
Advocacy Program
The Dystonia Medical Research Foundation (DMRF), Benign Essential Blepharospasm
Research Foundation (BEBRF), ST/Dystonia, Inc., National Spasmodic Dysphonia
Association (NSDA), and National Spasmodic Torticollis Association (NSTA)
advocate on legislative and regulatory issues of common concern as the
[17]Dystonia Advocacy Network (DAN).
DAN advocates were kept busy in 2010 as a number of issues emerged. The annual
effort to keep dystonia as one of the exclusive “conditions eligible for
study” through the Department of Defense Peer-Reviewed Medical Research Program
received special attention as DAN Advocate Kathy Rentfrow [pictured above,
meets with Senator Daniel Inouye (D-HI)] was called to testify on this issue
before the Senate Defense Appropriations Subcommittee.
DAN advocates also tackled an unexpected issue as access to the new dystonia
treatment Xeomin® was restricted by bureaucratic processes (After receiving FDA
approval, Xeomin® was not scheduled to receive a permanent unique billing code
for reimbursement until 2012, thus making it unlikely that physicians would
begin using the product for over a year). DAN advocates reached out to key
legislators and asked them to encourage the Center for Medicare and Medicaid
Services (CMS) to issue Xeomin® a temporary billing code as early as possible
so that dystonia patients with limited treatment options do not have to wait
for access to all approved therapies. Pictured above is DAN advocate Emma
Mattes with her Congressman, Bill Young (R-FL).
DAN advocates also worked to encourage passage of a key piece of legislation,
the National Neurological Diseases Surveillance Systems Act (H.R. 1362). This
bill would bolster research efforts by establishing a national network for the
collection and storage of data on neurological diseases. The House of
Representatives has passed this bill and if DAN advocates can convince the
Senate to pass the bill as well before Congress adjourns for the year, the H.R.
1362 will be sent to the President for final approval.
If you would like to join the DAN’s nationwide grassroots network by becoming a
dystonia advocate, please contact the DMRF’s Grassroots Coordinator, Dane
Christiansen, at [18]dchristiansen@dystonia-foundation.org
Awareness & Education
The DMRF was pleased to provide the dystonia community with the following
awareness activities and programs in 2010.
Awareness
The DMRF launched an online campaign to commemorate Dystonia Awareness Week,
June 6-12, 2010. Faces of Dystonia was a series of profiles about members of
the dystonia community. One profile was distributed on each day of Awareness
Week. The individuals represented diverse forms of dystonia, roles with the
DMRF, ages, and geography. Each story both highlighted the individual’s unique
story and reflected a DMRF program or activity.
Support
DMRF Support Groups empower patients, family members, and friends with
information and offer a venue for discussing and allowing their changing needs
to be heard. Support groups provide members the opportunity to be and stay
connected with others who can truly empathize with how dystonia changes lives.
To find a dystonia support group in your area, [19]click here.
Symposia
Deep Brain Stimulation Symposium & Dystonia Forum:The DMRF partnered with
University of California, San Francisco (UCSF) Movement Disorders Program and
the DBSforDystonia online bulletin board to host a special ‘double-decker’
event in May that included a track specifically on deep brain stimulation for
dystonia and sessions providing an overview of dystonia. Medical speakers
included experts from UCSF and Stanford University.
Western Regional Dystonia Symposium:The [20]Western Regional Dystonia Symposium
in Pasadena, California held in October featured DMRF Awareness Ambassador and
dystonia-affected guitarist Billy McLaughlin, who performed at the Friday
evening welcome dinner and reception. The stellar line-up of speakers included
professionals from throughout southern California and beyond.
Mid-Atlantic Regional Dystonia Conference: The Greater Washington, DC Dystonia
Support Group hosted an educational meeting in November. Experts presented on
the latest in dystonia research and treatments such as acupuncture and Chinese
medicine, traditional treatments and surgical options like Deep Brain
Stimulation. Breakout sessions were available for specific topics concerning
dystonia patients.
Webinars
Dystonia & Siblings focused on helping the siblings of those children affected
by dystonia. Moderated by Kathy Rentfrow, a mother of two and a foster parent,
has a teen-aged daughter who was diagnosed with dystonia. Kathy has been a
featured speaker at DMRF Children & Family Symposiam, has a masters degree in
education ans has been a long time advocate for dystonia.
[21]Dystonia International Patient Registry (DIPR), founded by Tyler's Hope for
A Dystonia Cure and supported by the Dystonia Medical Research Foundation
(DMRF). In this webinar, moderated by the DIPR's Medical Advisor Dr. Michael
Okun, discussed patient registries and why they are so important.
[22]Dystonia & Managing Holiday Stress, while full of excitement, this can also
be a time of increased stress which can worsen dystonia symptoms. Moderated by
Dr. Bryan Bernard, Neuropsychologist at Rush University Medical Center,
discussed techniques and learning ways of coping with stress.
Stay tuned...
Research Update moderated by Science Office Jan Teller, MA, PhD. Call and log
in to hear the latest news on DMRF science activities. Advance registration
encouraged.
For more information and to register, [23]
[24]click here.
Dystonia Programs
The Foundation launched two new fundraising programs, Dogs4Dystonia and
Dystance4Dystonia. A number of these events were held in communities across
the country to raise awareness and much needed funds to support our quest for a
cure.
Dogs4Dystonia are dog walks for everyone, whether you are a dog owner, a dog
lover, or someone who just wants to do something to support the work of the
DMRF in the dystonia community.
Thank you to Carmelita de la Guardia, Antonella Gosselin, Hunter Webster, Len
and Janice Nachbar, Joanna Manusov, and Maria and Amy Yurchision who hosted
walks this year.
Many took part in the Dystance4Dystonia
program participated in marathons, 10K, 8K, and 5K runs and walks across the
country.
Thank you to Jim and Dianne Loy, Kathleen Whitman,
William Williams, Team Libby, Dena Sherry, Edie DeLorme, Judy Watson, Julie
Zaia, Kara Wilke, Aaron and Jessica Meyer, Meredith Fain, Jen Cannon, Jennifer
Molski, Scott and Katie Biedess, Tiffany Wonser, Stephanie Wilson, Russ Johnson
and Helen Capparell for going the dystance.
Both programs offer family, friends, neighbors and colleagues the opportunity
to show their support for the dystonia community while helping to raise much
needed funds for our programming.
To learn more about how you can bring an event to your community, email Tammy
at [25]treed@dystonia-foundation.org
Upcoming Events
[26]
12/11/10 [27]Central Jersey Dystonia Support & Action Group
12/18/10 [28]Arkansas Dystonia SG Meeting
12/13/10 [29]Minneapolis, MN SG Meeting
01/26/11 [30]Research Update Webinar
02/05/11 [31]Rhode Island Dystonia & Neurological Movement
[32]disorder SG Meeting
[33]
[34]
For information about these or other events, please email us at
[35]enewsletter@dystonia-foundation.org.
References
1. mailto:enewsletter@dystonia-foundation.org?subject=Feedback%20about%20eNews
2. http://dystance4dystonia.org/joomla/index.php?option=com_content&view=article&id=47&Itemid=55
3. http://dystance4dystonia.org/joomla/index.php?option=com_content&view=article&id=46&Itemid=54
4. http://dmrfenews.blogspot.com/
5. http://www.facebook.com/inbox/?ref=mb#/pages/Dystonia-Medical-Research-Foundation/46820882711
6. http://www.myspace.com/thedmrf
7. http://thedmrf.ning.com/
8. http://twitter.com/dmrf
9. http://www.dystonia-foundation.org/pages/combined_federal_campaign/595.php
10. mailto:enewsletter@dystonia-foundation.org?subject=Questions,%20comments%20or%20concerns
11. http://www.dystonia-foundation.org/
12. mailto:enewsletter@dystonia-foundation.org
13. http://www.dystonia-foundation.org/pages/research_in_2010/148.php
14. http://www.dystonia-foundation.org/pages/dystonia_coalition_/603.php
15. http://www.dystonia-foundation.org/pages/articles/221.php?id=13
16. http://www.dystonia-foundation.org/pages/myoclonic_dystonia/65.php
17. http://www.dystonia-advocacy.org/
18. mailto:dchristiansen@dystonia-foundation.org?subject=Advocacy
19. http://www.dystonia-foundation.org/pages/support_groups/107.php
20. http://www.dystonia-foundation.org/pages/articles_from_the_dystonia_dialogue/221.php?id=19
21. http://www.dystonia-foundation.org/pages/dystonia_international_patient_registry_webinar/608.php
22. http://www.dystonia-foundation.org/pages/dystonia___holiday_stress_webinar/607.php
23. https://www2.gotomeeting.com/register/599425898
24. https://www2.gotomeeting.com/register/599425898
25. mailto:treed@dystonia-foundation.org
26. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=27&Itemid=89&year=2010&month=05&day=14&title=deep-brain-stimulation-forum-a-dystonia-symposium&uid=8f24db63e8c7c06db597a82258b43c11
27. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=133&Itemid=89&year=2010&month=12&day=11&title=central-jersey-dystonia-support-a-action-group&uid=07998a770716ba49695f6d5ddfb540a0
28. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=145&Itemid=89&year=2010&month=12&day=18&title=arkansas-dystonia-sg-meeting&uid=059982f7ae3399ace954d0a30945d441
29. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=148&Itemid=89&year=2010&month=12&day=13&title=minneapolis-mn-sg-meeting&uid=a8611e0d0c199a4f4f2b704a58d400d0
30. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=142&Itemid=89&year=2011&month=01&day=26&title=research-update-webinar&uid=78253f152274b15e93d87ff4d731a195
31. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=149&Itemid=89&year=2011&month=02&day=05&title=rhode-island-dystonia-a-neurological-movement-disorder-sg&uid=1f8ee053dfc624cfca198e18bc9802af
32. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=149&Itemid=89&year=2011&month=02&day=05&title=rhode-island-dystonia-a-neurological-movement-disorder-sg&uid=1f8ee053dfc624cfca198e18bc9802af
33. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=86&Itemid=89&year=2010&month=06&day=12&title=central-virginia-dysphonia-dystonia-sg-meeting&uid=678a6bbdfa2256a39aa1d83c4689d9d6
34. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=15&Itemid=89&year=2010&month=09&day=19&title=rnr-philadelphia-12-marathon&uid=4becdfa0f9c0515c6bc6a631db72c912
35. mailto:enewsletter@dystonia-foundation.org?subject=I%27d%20like%20more%20information%20on%20events
IN THIS ISSUE:
Science Highlights
Advocacy Program
Awareness & Education
Dystonia Programs
Upcoming Events
Tell us how we are doing. We would love to hear your thoughts about the
newsletter. Email us today at
[1]enewsletter@dystonia-foundation.org
[2]Go the Dystance4Dystonia and run for those who can't!
[3]Host a Dogs4Dystonia Dog Walk in your community today!
Would you like to access the newsletter 24/7?
[4]dmrfenews.blogspot.com
Would you like to receive updates by text message?
Text DYSTONIA to 90999.
Join us on one of our social networks:
Contact Information
One East Wacker Drive, Suite 2810
Chicago, Illinois 60601
800.377.3978
[10]enewsletter@dystonia-foundation.org
[11]www.dystonia-foundation.org
© 2010 DMRF
December 2010 - to ensure delivery, please add
[12]enewsletter@dystonia-foundation.org to your address book.
The DMRF is proud of the work carried out in 2010. The impact of our programs
is vast, touching the lives of many, making a difference far beyond what the
eye can see. As we look back on the year, it is evident that we are making
progress in the dystonia community.
Science Highlights
The DMRF funded a number of cutting-edge [13]research projects in 2010. In
addition to our grant and fellowship program which supports young
investigators, we contracted with researchers to fund targeted studies on the
development of animal models and testing of compounds that interact with
specific receptors in the brain. This work will expand our knowledge of
dystonia, leading to the development of new therapies.
Through our partnership with the [14]Dystonia Coalition, we supported the
Coalition’s Career Development Award Program, aimed at funding young clinical
investigators to help them establish careers in dystonia research. We also
continue to provide support to the Coalition as an administrative center and
work closely with the Coalition Primary Investigator, Dr. Buz Jinnah.
DMRF also assisted in the organization of the Dystonia Coalition’s Second
Annual Meeting held in Atlanta, GA. There were more than 100 participants
including healthcare professionals, researchers, pharmaceutical company
representatives, and representatives from dystonia patient organizations. The
meeting was a great success with many of the participants providing positive
feedback about the progress made by the Coalition in its first year.
The [15]DMRF is collaborating with Tyler’s Hope for a Dystonia Cure in funding
the second phase of a ground-breaking research project seeking to identify
proteins whose modification effects the genetic mutation that results in
dystonia. The first phase of the project, funded by DMRF in 2009, resulted in
an assay to test for genes and proteins that interact with torsinA. The second
phase of the project will screen the assay developed during Phase 1. The
outcome of this high risk, high return research could lead to targets for new
dystonia drugs.
As a result of outcomes from the Myoclonus Workshop held in late 2009, the DMRF
is supporting a Myoclonus Research Program over the next three years aimed at
supporting clinical research on [16]Myoclonus dystonia.
Advocacy Program
The Dystonia Medical Research Foundation (DMRF), Benign Essential Blepharospasm
Research Foundation (BEBRF), ST/Dystonia, Inc., National Spasmodic Dysphonia
Association (NSDA), and National Spasmodic Torticollis Association (NSTA)
advocate on legislative and regulatory issues of common concern as the
[17]Dystonia Advocacy Network (DAN).
DAN advocates were kept busy in 2010 as a number of issues emerged. The annual
effort to keep dystonia as one of the exclusive “conditions eligible for
study” through the Department of Defense Peer-Reviewed Medical Research Program
received special attention as DAN Advocate Kathy Rentfrow [pictured above,
meets with Senator Daniel Inouye (D-HI)] was called to testify on this issue
before the Senate Defense Appropriations Subcommittee.
DAN advocates also tackled an unexpected issue as access to the new dystonia
treatment Xeomin® was restricted by bureaucratic processes (After receiving FDA
approval, Xeomin® was not scheduled to receive a permanent unique billing code
for reimbursement until 2012, thus making it unlikely that physicians would
begin using the product for over a year). DAN advocates reached out to key
legislators and asked them to encourage the Center for Medicare and Medicaid
Services (CMS) to issue Xeomin® a temporary billing code as early as possible
so that dystonia patients with limited treatment options do not have to wait
for access to all approved therapies. Pictured above is DAN advocate Emma
Mattes with her Congressman, Bill Young (R-FL).
DAN advocates also worked to encourage passage of a key piece of legislation,
the National Neurological Diseases Surveillance Systems Act (H.R. 1362). This
bill would bolster research efforts by establishing a national network for the
collection and storage of data on neurological diseases. The House of
Representatives has passed this bill and if DAN advocates can convince the
Senate to pass the bill as well before Congress adjourns for the year, the H.R.
1362 will be sent to the President for final approval.
If you would like to join the DAN’s nationwide grassroots network by becoming a
dystonia advocate, please contact the DMRF’s Grassroots Coordinator, Dane
Christiansen, at [18]dchristiansen@dystonia-foundation.org
Awareness & Education
The DMRF was pleased to provide the dystonia community with the following
awareness activities and programs in 2010.
Awareness
The DMRF launched an online campaign to commemorate Dystonia Awareness Week,
June 6-12, 2010. Faces of Dystonia was a series of profiles about members of
the dystonia community. One profile was distributed on each day of Awareness
Week. The individuals represented diverse forms of dystonia, roles with the
DMRF, ages, and geography. Each story both highlighted the individual’s unique
story and reflected a DMRF program or activity.
Support
DMRF Support Groups empower patients, family members, and friends with
information and offer a venue for discussing and allowing their changing needs
to be heard. Support groups provide members the opportunity to be and stay
connected with others who can truly empathize with how dystonia changes lives.
To find a dystonia support group in your area, [19]click here.
Symposia
Deep Brain Stimulation Symposium & Dystonia Forum:The DMRF partnered with
University of California, San Francisco (UCSF) Movement Disorders Program and
the DBSforDystonia online bulletin board to host a special ‘double-decker’
event in May that included a track specifically on deep brain stimulation for
dystonia and sessions providing an overview of dystonia. Medical speakers
included experts from UCSF and Stanford University.
Western Regional Dystonia Symposium:The [20]Western Regional Dystonia Symposium
in Pasadena, California held in October featured DMRF Awareness Ambassador and
dystonia-affected guitarist Billy McLaughlin, who performed at the Friday
evening welcome dinner and reception. The stellar line-up of speakers included
professionals from throughout southern California and beyond.
Mid-Atlantic Regional Dystonia Conference: The Greater Washington, DC Dystonia
Support Group hosted an educational meeting in November. Experts presented on
the latest in dystonia research and treatments such as acupuncture and Chinese
medicine, traditional treatments and surgical options like Deep Brain
Stimulation. Breakout sessions were available for specific topics concerning
dystonia patients.
Webinars
Dystonia & Siblings focused on helping the siblings of those children affected
by dystonia. Moderated by Kathy Rentfrow, a mother of two and a foster parent,
has a teen-aged daughter who was diagnosed with dystonia. Kathy has been a
featured speaker at DMRF Children & Family Symposiam, has a masters degree in
education ans has been a long time advocate for dystonia.
[21]Dystonia International Patient Registry (DIPR), founded by Tyler's Hope for
A Dystonia Cure and supported by the Dystonia Medical Research Foundation
(DMRF). In this webinar, moderated by the DIPR's Medical Advisor Dr. Michael
Okun, discussed patient registries and why they are so important.
[22]Dystonia & Managing Holiday Stress, while full of excitement, this can also
be a time of increased stress which can worsen dystonia symptoms. Moderated by
Dr. Bryan Bernard, Neuropsychologist at Rush University Medical Center,
discussed techniques and learning ways of coping with stress.
Stay tuned...
Research Update moderated by Science Office Jan Teller, MA, PhD. Call and log
in to hear the latest news on DMRF science activities. Advance registration
encouraged.
For more information and to register, [23]
[24]click here.
Dystonia Programs
The Foundation launched two new fundraising programs, Dogs4Dystonia and
Dystance4Dystonia. A number of these events were held in communities across
the country to raise awareness and much needed funds to support our quest for a
cure.
Dogs4Dystonia are dog walks for everyone, whether you are a dog owner, a dog
lover, or someone who just wants to do something to support the work of the
DMRF in the dystonia community.
Thank you to Carmelita de la Guardia, Antonella Gosselin, Hunter Webster, Len
and Janice Nachbar, Joanna Manusov, and Maria and Amy Yurchision who hosted
walks this year.
Many took part in the Dystance4Dystonia
program participated in marathons, 10K, 8K, and 5K runs and walks across the
country.
Thank you to Jim and Dianne Loy, Kathleen Whitman,
William Williams, Team Libby, Dena Sherry, Edie DeLorme, Judy Watson, Julie
Zaia, Kara Wilke, Aaron and Jessica Meyer, Meredith Fain, Jen Cannon, Jennifer
Molski, Scott and Katie Biedess, Tiffany Wonser, Stephanie Wilson, Russ Johnson
and Helen Capparell for going the dystance.
Both programs offer family, friends, neighbors and colleagues the opportunity
to show their support for the dystonia community while helping to raise much
needed funds for our programming.
To learn more about how you can bring an event to your community, email Tammy
at [25]treed@dystonia-foundation.org
Upcoming Events
[26]
12/11/10 [27]Central Jersey Dystonia Support & Action Group
12/18/10 [28]Arkansas Dystonia SG Meeting
12/13/10 [29]Minneapolis, MN SG Meeting
01/26/11 [30]Research Update Webinar
02/05/11 [31]Rhode Island Dystonia & Neurological Movement
[32]disorder SG Meeting
[33]
[34]
For information about these or other events, please email us at
[35]enewsletter@dystonia-foundation.org.
References
1. mailto:enewsletter@dystonia-foundation.org?subject=Feedback%20about%20eNews
2. http://dystance4dystonia.org/joomla/index.php?option=com_content&view=article&id=47&Itemid=55
3. http://dystance4dystonia.org/joomla/index.php?option=com_content&view=article&id=46&Itemid=54
4. http://dmrfenews.blogspot.com/
5. http://www.facebook.com/inbox/?ref=mb#/pages/Dystonia-Medical-Research-Foundation/46820882711
6. http://www.myspace.com/thedmrf
7. http://thedmrf.ning.com/
8. http://twitter.com/dmrf
9. http://www.dystonia-foundation.org/pages/combined_federal_campaign/595.php
10. mailto:enewsletter@dystonia-foundation.org?subject=Questions,%20comments%20or%20concerns
11. http://www.dystonia-foundation.org/
12. mailto:enewsletter@dystonia-foundation.org
13. http://www.dystonia-foundation.org/pages/research_in_2010/148.php
14. http://www.dystonia-foundation.org/pages/dystonia_coalition_/603.php
15. http://www.dystonia-foundation.org/pages/articles/221.php?id=13
16. http://www.dystonia-foundation.org/pages/myoclonic_dystonia/65.php
17. http://www.dystonia-advocacy.org/
18. mailto:dchristiansen@dystonia-foundation.org?subject=Advocacy
19. http://www.dystonia-foundation.org/pages/support_groups/107.php
20. http://www.dystonia-foundation.org/pages/articles_from_the_dystonia_dialogue/221.php?id=19
21. http://www.dystonia-foundation.org/pages/dystonia_international_patient_registry_webinar/608.php
22. http://www.dystonia-foundation.org/pages/dystonia___holiday_stress_webinar/607.php
23. https://www2.gotomeeting.com/register/599425898
24. https://www2.gotomeeting.com/register/599425898
25. mailto:treed@dystonia-foundation.org
26. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=27&Itemid=89&year=2010&month=05&day=14&title=deep-brain-stimulation-forum-a-dystonia-symposium&uid=8f24db63e8c7c06db597a82258b43c11
27. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=133&Itemid=89&year=2010&month=12&day=11&title=central-jersey-dystonia-support-a-action-group&uid=07998a770716ba49695f6d5ddfb540a0
28. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=145&Itemid=89&year=2010&month=12&day=18&title=arkansas-dystonia-sg-meeting&uid=059982f7ae3399ace954d0a30945d441
29. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=148&Itemid=89&year=2010&month=12&day=13&title=minneapolis-mn-sg-meeting&uid=a8611e0d0c199a4f4f2b704a58d400d0
30. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=142&Itemid=89&year=2011&month=01&day=26&title=research-update-webinar&uid=78253f152274b15e93d87ff4d731a195
31. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=149&Itemid=89&year=2011&month=02&day=05&title=rhode-island-dystonia-a-neurological-movement-disorder-sg&uid=1f8ee053dfc624cfca198e18bc9802af
32. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=149&Itemid=89&year=2011&month=02&day=05&title=rhode-island-dystonia-a-neurological-movement-disorder-sg&uid=1f8ee053dfc624cfca198e18bc9802af
33. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=86&Itemid=89&year=2010&month=06&day=12&title=central-virginia-dysphonia-dystonia-sg-meeting&uid=678a6bbdfa2256a39aa1d83c4689d9d6
34. http://dystance4dystonia.org/joomla/index.php?option=com_jevents&task=icalrepeat.detail&evid=15&Itemid=89&year=2010&month=09&day=19&title=rnr-philadelphia-12-marathon&uid=4becdfa0f9c0515c6bc6a631db72c912
35. mailto:enewsletter@dystonia-foundation.org?subject=I%27d%20like%20more%20information%20on%20events
IN THIS ISSUE:
Science Highlights
Advocacy Program
Awareness & Education
Dystonia Programs
Upcoming Events
Tell us how we are doing. We would love to hear your thoughts about the
newsletter. Email us today at
[1]enewsletter@dystonia-foundation.org
[2]Go the Dystance4Dystonia and run for those who can't!
[3]Host a Dogs4Dystonia Dog Walk in your community today!
Would you like to access the newsletter 24/7?
[4]dmrfenews.blogspot.com
Would you like to receive updates by text message?
Text DYSTONIA to 90999.
Join us on one of our social networks:
Contact Information
One East Wacker Drive, Suite 2810
Chicago, Illinois 60601
800.377.3978
[10]enewsletter@dystonia-foundation.org
[11]www.dystonia-foundation.org
© 2010 DMRF
Subscribe to:
Posts (Atom)
Posts
