Brian's Run

Many people take running for granted – thinking their legs will go whenever they want – moving. This is not the case for those living with dystonia. This is certainly not the case for Brian Stephenson. Dystonia took control of his body when he was a kid, 12 years old. Similar to the experiences of others, dystonia mysteriously invaded his body. His jaw was affected first. His voice was next and finally his neck. Dystonia not only robbed him of his ability to control his body but also robbed him of much of his childhood.

Like so many living with dystonia, Brian embodies courage and strength. His story inspires. Brian is an accidental hero who proclaims to all, “I run because I can. And I run for those who can’t.”

Several years ago, Brian underwent DBS – traveling from his home in Western MI to Chicago for the surgery and subsequent programming, and then for the treatment of the numerous infections he has experienced. He started running to make a statement about his commitment to living life to its fullest, now that he had control of his body again. With the support of his wife Robyn and his two beautiful daughters, Brian will be running in the Chicago Marathon on behalf of dystonia and the DMRF. He is amazing and his dedication unconditional. Join me in wishing Brian the best of luck in his training for this physical challenge. You can follow his training at his blog: http://dmrfaccidentalhero.blogspot.com

National Organization for Rare Disorders (NORD)

Yesterday, the National Organization for Rare Disorders hosted a fabulous gathering to discuss how to accelerate the development of new treatments for rare disorders, such as dystonia. The Partners in Progress Rare Disease Summit, held in Washington, DC featured Tommy Thompson, former Health and Human Services Secretary and four-term Governor of Wisconsin, as the keynote speaker. David Kessler, MD, JD, former Commissioner of FDA chaired the summit that also featured presentations by: Janet Woodcock, MD who serves as the Director of the FDA's Center for Drug Evaluation and Research, Michael Astrue, JD, Commissioner of the Social Security Administration, Francis Collins, Former Director of the NIH's National Human Genome Research Inistitute and many other leaders from FDA, industry and healthcare reform.

Dr. Woodcock spoke about the importance of patient organizations being a part of a movement to stimulate the development of new treatments. The DMRF is doing this through the Cure Dystonia Initiative (CDI) and over lunch I was able to describe CDI to Dr. Kessler. During our discussion we also talked about the challenges many advocacy organizations, like the DMRF, face when launching and supporting a translational research program. We hope this discussion will help to engage NORD in supporting organizations like DMRF in our efforts.

You all should know that you are a part of a organization that is committed to achieving our goal of identifying better treatments while we work toward that day when we close our doors because we have a cure. Yesterday, was confirmation that we are on the cutting edge in this effort - and we able to do this because of the support and trust of our members, donors and the DMRF community. Thank you all!

Congratulations to NORD on a fabulous meeting and to Claire Centrella, DMRF's President, who is a member of the NORD Board of Directors.

Changing Keys Wins Platinum at Houston International Film and Video Festival

The new dystonia documentary, "Changing Keys: Billy McLaughlin and the Mysteries of Dystonia" chronicles the unlikely triumph of guitar virtuoso Billy McLaughlin over focal hand dystonia. Billy was recently appointed a Dystonia Medical Research Foundation Awareness Ambassador for his efforts to increase the visibility of this debilitating neurological disorder.

Congratulations to director Suzanne Jurva and the entire Changing Keys production team for winning top honors, a Platinum Remi Award, at this year's Houston International Film Festival. Changing Keys earned this prestigious award from over 4,300 films submitted to this year's competition.

To catch up on all the press Billy and Changing Keys have attracted to increase awareness, visit http://www.billymacmusic.com/news.shtml

Dystonia Advocacy Day - Recap

Pictured above: Beth and Joel Farber present Congresswoman Jan Schakowsky of Illinois with the Distinguished Service Award


The Dystonia Advocacy Coalition’s 2009 Advocacy Day was fabulous! Many thanks to the nearly 100 advocates who participated in educating our Members of Congress about dystonia and what they can do to help us achieve our goal of a cure for all forms of dystonia. The training session on Tuesday was successful – as it really prepared advocates for how to present our legislative agenda, how to handle questions but more importantly the time together provided the opportunity for experienced advocates to help first time advocates get more comfortable with what they were going to do. It was wonderful to see these first time advocates at the end of the day, exhausted because of all of the walking between offices in the Senate and the House building and exhilarated by their role in helping these leaders understand what dystonia is and how they can help us to make a difference in the lives of those who live with dystonia every day. Nearly half of our advocates were new this year and all eagerly committed to joining us again next year!


The 2009 DAC Advocacy Coalition Distinguished Public Service Award was presented to the Honorable Jan Schakowsky. The Congresswoman has represented the 9th District of Illinois for the past 10 years and has been a long-time supporter of NIH funding, was important in getting the GINA legislation finally passed last year and is a friend to the dystonia community. Congresswoman Schakowsky and her Chief of Staff Cathy Hurwit joined the DAC advocates for dinner Tuesday evening. We were thrilled to have her with us and to recognize her efforts with the award.


The DAC also welcomed two guests from another national organization who observed the training and the Congressional visits to see how we do this program. They were generous in their comments about how impressed they were to see five different organizations working together in such a focused, concerted way.


We salute all of our advocates, those who were able to join us this week, and everyone who has worked to educate legislators as to the needs of the dystonia community for their tireless efforts!



Pictured above: The IL and ME team just before ‘hitting the Hill’

Personal Testimonies

Pictured above is Dale Dirks, President, Health & Medicine Counsel of Washington – briefing dystonia advocates


Recently we put a call out for people to share their stories with us and we are thrilled with the response. Thank you to all of you who have written and to all of you who have shared your stories with others so that people can better understand what dystonia is and how it changes the lives of those affected.

Tomorrow the DMRF will join with representatives from the Benign Essential Blepharospasm Research Foundation, DySTonia, Inc., the National Spasmodic Dysphonia Association and the National Spasmodic Torticollis Association to prepare for our Wednesday visits with Members of Congress – to help them learn about dystonia and how they can help us in our mutual goals of wiping-out dystonia. This is an important and exciting annual activity and these five organizations have been working together for the past several years as the Dystonia Advocacy Coalition to make the dystonia messages to our legislative leaders louder and stronger. We will meet to talk about the need for increases in NIH funding, concerns about patient access to treatments/reimbursement for medications, and concerns the dystonia community has regarding proposed follow – on biologics legislation but it is the personal stories the Members of Congress and their staff persons will remember. We are educating these legislators – one shared story at a time and it is making a difference.

We look forward to sharing with you stories from Advocacy Day but in the meanwhile – keep your stories coming.

American Academy of Neurology Meeting

This week the American Academy of Neurology is meeting in Seattle for their annual meeting. The DMRF has a booth there – giving us an opportunity to talk directly with neurologists about dystonia and how the Foundation can be a resource for them in meeting the needs of people affected by dystonia. We noticed that more and more general neurologists are coming to us to ask about our patient support programs, educational materials and how we might be able to work together to meet patient needs. This is progress and something the entire dystonia community should celebrate.

This meeting also provides us with a wonderful opportunity to meet with the leaders in dystonia clinical research, members of the Dystonia Study Group and others, to discuss our upcoming plans. We are so grateful to these dedicated physicians for their great work. Many of you know them and may even be treated by them so you know first hand how committed they are to improving the lives of those living with dystonia. There are exciting new things happening that will be announced in the next few months and we will keep you posted.

Set your DVRs tomorrow - dystonia segment to appear on The Doctors - April 30th

April 30th - Segment on dystonia to appear on The Doctors

Please set your DVRs tomorrow (4/30/09) to see a dystonia segment on the CBS talk show, The Doctors.

Visit http://www.thedoctorstv.com to find out when the show will air in your area. We would like to thank Alex for so candidly sharing her experiences with dystonia. We would also like to extend a special thanks to Dr. Mark Lew for all of his work in the dystonia community.

Then join the discussion about the show on our social networking site at http://thedmrf.ning.com.

Want to see a clip of tomorrow's show?
http://www.thedoctorstv.com/main/show_page/206