Musicians with Dystonia Program Renamed

By Glen Estrin, President, The Leon Fleisher Foundation for Musicians with Dystonia

Glen Estrin (L), Leon Fleisher (C), and Dr. Steven Frucht partnered with DMRF to bring awareness to musician’s dystonia and fund medical research.

This essay was originally published in the Dystonia Dialogue.

The Musicians With Dystonia program of the DMRF was initiated in 2000 by movement disorder neurologist Dr. Steven Frucht and me, a professional French Horn player whose illustrious career was ended by focal embouchure dystonia at the age of 42. We established our Foundation to create awareness and provide information, support, and medical referrals throughout the world. Our first task was to assemble two Boards, a Musical Advisory and a Medical Advisory. Our search for the most appropriate Board members led first and foremost to Leon Fleisher.

Leon Fleisher, who sadly left us August 2 at age 92, was the most celebrated American born pianist of the 20th century, and was renowned internationally for his superb talent for eight decades. In 1964, at age 36, the fourth and fifth fingers of his right hand began to mysteriously curl.

The perplexing malady afflicting Leon was given dozens of diagnoses, all of them incorrect. He started performing with strictly his left hand, and turned his musical focus to conducting and teaching. After searching tenaciously for almost 25 years for an answer, Leon was finally diagnosed with focal dystonia. Adult onset, task-specific writer’s cramp dystonia was a diagnosis for the strangely thwarted and impeded performance of any fine motor skill, from surgeons with scalpels to golfers putting. The diagnosis had not been applied to musical motor skills until the relentless search by Leon and his good friend Gary Graffman, a much-admired American pianist who also exhibited the strange affliction. Maestros Fleisher and Graffman are known as the “Grandfathers of dystonia as a musician diagnosis.”

Leon Fleisher was one of the most famous classical musicians on the planet, and the leader in the diagnosis of dystonia for musicians, so it was quite natural to ask his participation in our musician program in 2001. This warm, wonderful, generous man wholeheartedly agreed.

In 2004, Leon’s tremendous support of the dystonia cause led to the phenomenal Freedom To Play awareness program. This 16-month long dystonia awareness initiative was worldwide, and featured Leon as the greatest public spokesperson for dystonia ever known. In conjunction with the program, Leon received aware-ness awards for his significant contributions to the disorder at the annual meetings of The American Academy of Neurology, the American Neurological Association, the Movement Disorders Society, and the Society for Neuroscience.

The pharmaceutical public relations agency that implemented the program estimated the word dystonia was heard or read, amazingly, by over 250 million people worldwide due to massive print and broadcast coverage.

Not only was the Freedom To Play program responsible for the greatest awareness creation in the history of dystonia, it also stimulated enormous donations to the DMRF and for research. Leon Fleisher will forever be remembered as one of the greatest advocates for awareness and financial contributions the dystonia world will ever know. Dr. Frucht and I are now extremely pleased to announce with the DMRF, and the gracious permission of Leon’s widow Katherine Jacobson Fleisher, the renaming of our well-established 20-year old Foundation to honor Leon. Musicians With Dystonia will now proudly be known as The Leon Fleisher Foundation for Musicians with Dystonia.

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