Musicians With Dystonia: A First Year Report
2001 Health Care Supplement
Volume CI, No. 5May, 2001
Musicians With Dystonia was founded last year to raise awareness of focal dystonia in the musical and general community, offer practical support to musicians afflicted with the condition, and raise money to support research into this motor control disease, which musicians are at much greater risk for than the general population. The group is affiliated with the Dystonia Medical Research Foundation.
We have enjoyed a productive first year. One highlight was a fundraising concert last October, at Carnegie Hall’s Weill Recital Hall. Local 802, with the support of the CAC, assisted in sponsorship for the concert. A wonderful roster of performers included pianist Peter Nero and the Brentano String Quartet. Mr. Nero is a member of the Foundation’s Musical Advisory Board, as is Skitch Henderson, who delivered a heartwarming talk that evening.
2001 will bring more challenges. Increasingly, members of the music community afflicted with focal dystonia are coming to us with personal and professional problems we are striving to address. We provide information regarding “centers of excellence” for treatment, as well as assistance in filing applications for insurance, disability pensions and worker’s compensation.
“Musicians and Focal Dystonias” will be a featured topic at the Fourth International Dystonia Symposium, to be held Sept. 20-22 in Chicago. Chairing the session will be Dr. Richard Lederman of the Cleveland Clinic. Dr. Steven Frucht, co-founder of Musicians With Dystonia and a neurologist at Columbia Presbyterian Medical Center in New York, will be presenting. Also presenting will be two of our Medical Advisory Board members: Dr. Michael Charness, Professor of Neurology at Harvard Medical School, and Dr. Eckart Altenmuller, a renowned hand specialist from Hanover, Germany, who will report on ongoing research and current therapies.
Dystonias affecting musicians and vocalists will also be addressed at the Health and Performing Artist Conference in Glasgow, Scotland, in August. Dr. Altenmuller will present, as well as another Medical Advisory Board member, Dr. Alice Brandfonbrener of the Rehabilitation Institute of Chicago.
Musicians With Dystonia may be contacted at The Dystonia Medical Research Foundation, One East Wacker Drive, Suite 2430, Chicago, IL 60601. The phone number is (888) 346-3673. Information is also available on the foundation’s web site at www.dystonia-foundation.org. Another source of information about focal dystonia and its impact on musicians is articles in two previous Allegro Health Supplements, published in April 1999 and May 2000.
Local 802 member Glen Estrin has been working to make musicians aware of focal dystonia since 1999, when he was diagnosed with the condition after losing his ability to play the French horn.