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.

Gratitude for Our Dystonia Advocates

Many thanks to the nearly 100 advocates who traveled to Washington, DC this week to make sure dystonia remains a priority to our legislators. Words cannot express the gratitude we have for all of you – for sharing your stories, navigating the maze-like halls of the Congressional office buildings, and making sure key Congressional staff persons know about dystonia and how they can help. The DMRF is proud to be a part of the Dystonia Advocacy Network, joining with the Benign Essential Blepharospasm Research Foundation, the National Spasmodic Dysphonia Association, the National Spasmodic Torticollis Association, and ST/Dystonia in hosting this event, but just as importantly, working throughout the year to keep dystonia on the minds of our Congressional leaders.

Congratulations to our Douglas Kramer Advocacy Award recipients, pictured below. From left to right, we applaud Melissa Phelps, Nicole Dean, and Allison London.. We look forward to working with these dedicated, young advocates in continuing to push the dystonia legislative agenda forward.

A special thank you to all of our advocates for your work these past few days. Great job, everyone!

Join Us for Dystonia Advocacy Day

It may feel in some areas of the country that spring will never come this year.  So many are dealing with mounds of snow and cold temperatures – it’s hard to be able to overlook all of that and think about any spring activity.  We hope you will be able to look beyond all that snow and look to an exciting spring program: consider joining with other dystonia advocates to educate Members of Congress about dystonia and ask them to help us meet the needs of this community.

Dystonia Advocacy Day is just one of the many things we do with our advocacy program every year.  It happens every spring in Washington, DC. Because of the many tireless advocates that have participated in years past—and the added efforts of dedicated advocates throughout the year—the dystonia community has had researchers funded through the Department of Defense Peer Review Medical Research Program, allowed for easier access to all FDA approved treatments for dystonia, and joined with other organizations in calling for increased funding for the National Institutes of Health and for appropriate reimbursement for physicians.

The dates this year are April 30 - May 1st.  We will do an orientation for new advocates on April 30 and give you an overview of what to expect. Then there is a briefing for all advocates later that afternoon.  The day is topped off with a dinner—giving you a chance to meet with other advocates.  People are put into teams so no one has to go into a meeting alone.  All advocates are sent materials in advance,  and we prepare packets filled with specific information on what we are asked Members of Congress to support.  You don't have to worry about becoming a legislative expert –it’s your story that makes the difference and makes dystonia real for legislators and their staff.

If you are interested, please consider joining us.  Once we receive your registration, you will get an email confirming that you are registered.  We will ask you what hotel nights you need, if you have dietary restrictions, etc.  We will make your hotel reservations and send you your hotel confirmation number.  You will be sent materials in advance of arriving in Washington, DC to review so you will be prepared for the orientation and briefing.

We hope you will be able to participate this year.  It is such an important activity.  Click here to register for Dystonia Advocacy Day.

If you have questions, please contact the office at dystonia@dystonia-foundation.org or 312-755-0198.