The DMRF has grown from a small family-based foundation into a dynamic membership-driven organization.
The DMRF is led by a Board of Directors and network of volunteers with personal connections to dystonia. Because dystonia hits so close to home for our directors and volunteers, the DMRF leadership is motivated by an unrelenting drive to find a cure and an unwavering commitment to serving people affected by dystonia.
The DMRF is governed by a volunteer Board of Directors led by the President.
The Board serves as the principle fundraising and decision-making body.
Honorary Chair & Co-Founder
Lifetime Honorary Directors
Mahlon R. DeLong, MD, Scientific Director Emeritus
Stanley Fahn, MD
Board of Directors
Richard A. Lewis, MD
Vice President of Science
Vice President of Awareness & Activities
Karen K. Ross, PhD
Vice President of Support
Vice President of Public Policy
Vice President of Development
Erwin Jackson, PhD
Pamela Sloate, JD
Joel S. Perlmutter, MD, Scientific Director, ex officio
Billy McLaughlin, Awareness Ambassador, ex officio
Janet Hieshetter, Executive Director, ex officio
The Medical & Scientific Advisory Council (MSAC) is comprised of pre-eminent clinicians and researchers.
The MSAC represents expertise in microbiology, genetics, brain circuitry, epidemiology, and related fields. These scientists conduct peer-review of research applications for recommendation to the Board for funding. Members set the directions of research and participate in focus workshops.
Joel S. Perlmutter, MD
Mahlon R. DeLong, MD
Scientific Director Emeritus
Emory University School of Medicine
Nicole Calakos, MD, PhD
Jean-Francois Daneault, PhD
Michelle Ehrlich, MD
Mount Sinai School of Medicine
Alfonso Fasano, MD, PhD
Jesse Goldberg, MD, PhD
Pedro Gonzalez-Alegre, MD, PhD
University of Pennsylvania
Mark Hallett, MD
National Institute of Neurological Disorders and Stroke
Ellen Hess, PhD
Niccolo Mencacci, MD, PhD
Jill Ostrem, MD
University of California, San Francisco
Terence Sanger, MD, PhD
University of Southern California
Christian Schlieker, PhD
Aasef Shaikh, MD, PhD
Case Western Reserve University
Roy Sillitoe, PhD
Baylor College of Medicine
Veronique VanderHorst, MD, PhD
Cynthia Comella, MD - ex officio
Rush University Medical Center/Dystonia Study Group
H.A. Jinnah, MD, PhD - ex officio
Principal Investigator, Dystonia Coalition
Codrin Lungu, MD
Musicians With Dystonia was founded in 2000 by professional French Horn player Glen Estrin and Steven Frucht, MD.
The group is dedicated to serving the special needs of musicians affected by task-specific focal dystonia, particularly hand and embouchure dystonias.
As a program of the DMRF, the Musicians with Dystonia group adheres to the policies and standards of the Foundation, the Board of Directors, and the Medical and Scientific Advisory Council. The structure includes the Musicians Advisory Board and the Musicians Medical Advisory Committee.
The Musicians Medical Advisory Committee provides input to the Medical and Scientific Advisory Council on issues related to task-specific dystonia and contributes to the development and guidance of research initiatives. Although the Musicians Medical Advisory Committee may be consulted on matters of grant recommendation, the Medical and Scientific Advisory Council is solely responsible for the final recommendation of grant proposals. Members of the Musicians Medical Advisory Committee are responsible for encouraging grant applications among colleagues and providing physician education programs.
For more information, email:
Musicians With Dystonia Advisory Board
President & Co-Founder
Leon Fleisher, in memoriam
Musicians with Dystonia Medical Advisory Committee
Steven Frucht, MD
Chair and Co-Founder
Eckart Altenmuller, MD
Nancy Byl, PT, PhD
Michael Charness, MD
David Eidelberg, MD
Stanley Fahn, MD
Blair Ford, MD
Jennifer Goldman, MD
Paul Greene, MD
Mark Hallett, MD
Hans-Christian Jabusch, MD
Richard Lederman, MD, PhD
Mark Lew, MD
The Dystonia Medical Research Foundation’s Community Leadership Council (CLC) is a group of local community leaders from across the United States who are dedicated to working with the DMRF Board of Directors and staff to achieve the Foundation’s mission.
Beth S. Farber
Karen A. Flanagan
James A. Metherell
Content for the Dystonia Dialogue newsletter is guided by a volunteer Editorial Board:
Barbara Kessler, Chair
A professional staff administers the daily operations for the DMRF.
Each staff person is committed to meeting the needs of the dystonia community.
Manager of Community Engagement
Director of Development
Editor and Special Projects
Director of Finance
Brain Bank Liaison
Associate Director of Development
Science and Technology Manager
Jan Teller, MA, PhD
Chief Scientific Advisor