Running for Those Who Can't

Webster's dictionary says to run is move with your legs at a speed that is faster than walking. The DMRF says to run is to dedicate yourself to doing something that so many cannot because of their dystonia: “Running for those who can’t.” This past weekend runners from the east coast to the west coast took to the streets to run marathons and half marathons because they were motivated to do so for the many who have generalized dystonia, cervical dystonia, or blepharospasm and who can’t run. They trained for months to prepare for their events. They sacrificed family time, personal time, because they wanted to be a part of the DMRF’s efforts to find a cure for dystonia.

On the West coast:  Carrie Siu Butt ran because she finally can run.  Carrie has dystonia and she has been running and challenging her body in many ways since her deep brain stimulation (DBS).  This was her last half marathon and she made it look easy--but we know it wasn’t. She continues to inspire us and we are so happy for her and so proud of her accomplishment.

On the East coast: The DMRF team of 10 set out to battle the winds, the bridges and the thousands of other runners in the New York Marathon. They ran to honor a loved one living with dystonia or because, after learning about dystonia, they wanted to be the legs for the people who are not able to run.  They worked so hard to prepare for Sunday and all finished strong.  We’re thankful to all our runners: Megan Crofton, Jennifer DeVore, Basil Fedorchenko, Marnie Kudon, Ricky McAndress, Matty Merill, Tatyana Sharoubim, Danielle Wanglien, Jessica Wetters, and Laura Willis

Congratulations to all! We are humbled by your commitment and your actions. Thank you for your sweat, blisters and tears. The funds you raised will be put to good use with our research program.  Thank you!

Dystonia Community Loses Good Friend

This week the dystonia community lost a good friend with the death of Congressman Bill Young. Through his actions to have dystonia included on the list of conditions eligible for the Department of Defense Peer Review Medical Research Program, he demonstrated not only his strong commitment to veterans who suffered  traumatic brain injury and subsequently developed dystonia but all who are affected by dystonia. Because of his commitment, dystonia researchers have been able to compete for funding and research projects are underway. Chairman Young was a champion for the dystonia community. Our sympathies go out to his wife and family. We will remain forever grateful to Bill Young for his tireless efforts.

The Power of Volunteers

“Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has.” 

--Margaret Mead

This quote has always resonated with me because it reflects the very nature of patient advocacy groups such as DMRF.  I was personally reminded of the power of committed citizens over the weekend as the DMRF Board of Directors held its mid-year meeting, which was followed by the DMRF Leadership Conference.

These meetings of world-changers were energizing, invigorating and inspiring! As an organization we are so fortunate to have the benefit of such dedicated, creative, and selfless people who are all absolutely committed to achieving the Foundation’s mission.

The DMRF Board of Directors met to review programs and progress for the year and to prepare for our very aggressive plans for 2014. The Board is comprised of thoughtful, smart people who are all affected by dystonia and support the DMRF’s efforts to fund research that will yield the most promising treatments for all forms of dystonia and, ultimately, a cure. Board members also provide keen insights into the DMRF’s awareness, advocacy, and support programs because they know personally the importance of these programs to people affected by dystonia and their families. The DMRF feels deeply its responsibility to those seeking help while waiting for scientific breakthroughs; our Board’s dedicated work reflects that every day.

The DMRF Leadership Conference was a time for learning, sharing, and re-fueling. Local leaders and online moderators from across the country came together to hear about DMRF programs and to provide input into the development of new activities that can fill the gaps in our education, awareness, and support efforts. Our leaders are selfless, clever, dedicated individuals who battle their own dystonia or stand by in frustration while a loved one struggles to meet the challenges of a day with dystonia. All the participants were extraordinarily generous in sharing their time and experiences. As a result, the support network will be stronger and more responsive to those who need to know they are not alone.

These thoughtful, committed citizens of the dystonia community are changing the world. There are no words to express the depth of our gratitude for all they do.

Experts Publish Updated Dystonia Definition and Classification

During the 2011 annual meeting of the Dystonia Coalition, Dr. Alberto Albanese of the University of Milan (Italy) asked if the DMRF would support a small meeting of experts to review the definition and classification of dystonia that an ad hoc group of experts convened by the DMRF devised in 1984. The research had advanced so much that the time was right to update how clinicians describe and discuss dystonia. Dr. Albanese’s suggestion was the start of a two-year, international effort that has resulted in a revised dystonia definition and classification published online by Movement Disorders. The print article will appear in a fall issue of the journal.

We are grateful to Dr. Albanese and those who joined him for their tireless efforts with this major task: Drs. Kailash Bhatia (London), Susan Bressman (New York), Mahlon DeLong (Atlanta), Stanley Fahn (New York), Victor Fung (Sydney), Mark Hallett  (Bethesda, Maryland) , Joseph Jankovic (Houston), H. A. Jinnah (Atlanta), Christine Klein (Lubeck, Germany), Anthony Lang (Toronto), Jonathan Mink (Rochester, New York), and Jan Teller (Raleigh, North Carolina). Going forward, we hope this new definition will help to make communications regarding dystonia clearer and will be more helpful for clinicians.

Look for future communications from the DMRF to help explain what this development means for individuals with dystonia, and how this may impact the language your doctor uses in relation to dystonia.

From left to right, Drs. H.A. Jinnah, Kailash Bhatia, Christine Klein, Stanley Fahn, Mahlon DeLong, Anthony Lang, Jan Teller, and Alberto Albanese are some of the expert clinicians on the committee to update the clinical definition of dystonia.

Fighing for a New Independence

The 4th of July is our national holiday that commemorates our independence, giving generations that followed all the freedoms afforded us through this democracy.  As we plan for the holiday, it is so important to remember that those who are affected by dystonia do not have all freedoms others enjoy – they have been robbed of the basic freedom to move, to control their bodies.  Like the signers of the Declaration of Independence, we too are fighting for a revolution: battling this disorder in order to restore the freedom to move.  We will not stop until we can claim victory!  Many are engaged in this battle.  Those who live every day with the pain and limitations dystonia brings are joined by many allies: researchers across the globe who are working every day to better understand the mechanism of dystonia so we can stop it at its origins and to find treatments, families who are working so hard to make life better for their loved ones, and friends who would do anything to advance our cause.  On this 4th of July, we salute you all for sharing your stories to raise awareness of dystonia, to everyone who is a source of comfort and support for persons living with dystonia, and finally to the researchers who are getting us closer to a new independence.  Enjoy your holiday and never forget – our work continues.

 

NINDS INSPIRE Workshop

Last week the National Institute of Neurological Disorders and Stroke held a workshop that brought together investigators, study coordinators, patient advocacy groups, clinicians, NIH representatives and others to discuss how we can enhance recruitment to and retention in neurological clinical studies.  I was proud to be invited to participate in the patient-centered research in neurology workgroup.  

The workshop, INSPIRE (Improving Neurological Subject (and Provider) Participation in the Research Enterprise) had an ambitious agenda – to produce ideas and tools that can be used to help recruit study participants and to keep those who are engaged in the trials.  It was an opportunity to express the barriers and frustrations that many study participants experience when they do enroll in studies.  

Having patient centered trials helps to ensure that the patient voice is represented throughout the process – something that is so important to success.  Without trials there are no new treatments.  Participating in a clinical trial is so very important and an action that serves the entire community.  I was so pleased to be there and so happy that dystonia was included in this important discussion.  The INSPIRE program will continue and I will keep you updated on the recommendations and progress.

Jan Teller is DIA Paitient Advocate Fellow

Congratulations to Jan Teller, DMRF’s Chief Scientific Officer on his recognition from the Drug Information Association (DIA) as a Patient Advocate Fellow.  Dr. Teller will represent the DMRF at the upcoming DIA annual meeting in Boston, MA.  He is one of 19 representatives selected from patient organizations working on rare or underrepresented diseases.

While at this national meeting, Dr. Teller will meet on drug discovery, management of pharmaceuticals, biotech, medical devices and other clinical applications. Fellows will also be given a unique opportunity to meet with policymakers, industry representatives, and research institutions.  It is good to know dystonia will be represented so well at this important meeting.  Many thanks to Dr. Teller for his efforts here and with all he does for the dystonia community. Way to go!!

Dr. Teller (left) works closely with DMRF Scientific Director Mahlon R. DeLong, MD, Professor of Neurology, The Emory Clinic, on all aspects of the DMRF Science Program.