Monday, July 22, 2013

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.

Tuesday, July 2, 2013

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.