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.

Thanks and Congrats to Ali London for NY Times Op Ed

Thanks and congratulations to Allison London for her excellent Op Ed in the May 19 New York Times entitled “Disease and the Public Eye” where she discusses her experience with dystonia and thoughts on disease awareness. We join with others in expressing our gratitude to Ali for sharing her story so that others might learn more about dystonia and how it changes the lives of those affected. It takes courage and commitment to open yourself up like this. Thank you to Ali and everyone who has shared their dystonia stories. You are our "celebrities" and we thank you!

In the photo: Allison London is one of three recipients of the DMRF’s Douglas Kramer Young Advocate Award announced earlier this year. Pictured left to right: Melissa Phelps, Nicole Dean, Allison London.