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

The Musicians With Dystonia program of the DMRF has been renamed The Leon Fleisher Foundation for Musicians with Dystonia, in memory of the influential and beloved pianist and prominent public champion for dystonia. Mr. Fleisher sadly passed away earlier this year. The Leon Fleisher Foundation for Musicians with Dystonia was created in 2000 by French Horn player Glen Estrin and movement disorder specialist Steve Frucht, MD to address the special needs of musicians affected by task-specific focal dystonia, particularly hand and embouchure dystonias.

Read Glen Estrin’s essay in the Dystonia Dialogue on the new naming of The Leon Fleisher Foundation for Musicians with Dystonia.

Professional musicians are susceptible to a number of occupational conditions, including task-specific focal dystonia. Focal dystonia is a neurological disorder characterized by abnormal muscle movements and postures, often triggered by specific, repetitive actions such as writing or playing an instrument. Musicians are prone to developing dystonia in muscles in use while performing, namely the embouchure, hand, and fingers. The early signs of musician’s dystonia are lapses in the instinctive ability to perform on the instrument, often progressing to a dramatic decline in the individual’s fine motor control. The disorder has gained attention for derailing the careers of high-profile musicians like Mr. Fleisher and fellow piano legend Gary Graffman, guitar virtuoso Billy McLaughlin, and many others. Treatment for focal dystonia in musicians must be highly customized to the needs of the individual. Musical retraining, botulinum neurotoxin toxin injections, and/or rehabilitation methods may be beneficial.

“Coming to grips with your own dystonia-future is much better when you can share it. I was lucky that one of my guitar students, upon learning about my diagnosis said, ‘You should call my uncle who plays piano. I think he has the same thing!’ I called his Uncle Leon the next day, fully amazed and aware I was speaking to one of American classical music’s 20th century masters. I was gently and fully embraced by Leon’s welcoming understanding of how dystonia can affect a musician’s life, career, and outlook on the future – his humanity and caring made a difference for me on an epically personal scale for which I am eternally grateful.”
– Billy McLaughlin, Guitarist/Composer and DMRF Awareness Ambassador

The Dystonia Medical Research Foundation is a 501(c)(3) non-profit organization dedicated to advancing research for improved dystonia treatments and ultimately a cure, promoting awareness, and supporting the well-being of affected individuals and families.