People
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
Frances Belzberg
Lifetime Honorary Directors
Mahlon R. DeLong, MD, Scientific Director Emeritus
Stanley Fahn, MD
Board of Directors
Art Kessler
President
Richard A. Lewis, MD
Vice President of Science
Barbara Kessler
Vice President of Awareness & Activities
Karen K. Ross, PhD
Vice President of Support
Carole Rawson
Vice President of Public Policy
Ronald Hersh
Vice President of Development
Sandra Weil
Network Liaison
Mark Rudolph
Treasurer
Directors
Jon Davis
John Downey
Donna Driscoll
Marilynne Herbert
Erwin Jackson, PhD
Stefanie Jackson
Brian Keane
Dennis Kessler
Rosalie Lewis
Allison London
Liz Rawson
Diane Rudolph
Paula Schneider
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
Scientific Director
Washington University
Mahlon R. DeLong, MD
Scientific Director Emeritus
Emory University School of Medicine
Nicole Calakos, MD, PhD
Duke University
Jean-Francois Daneault, PhD
Rutgers University
Michelle Ehrlich, MD
Mount Sinai School of Medicine
Alfonso Fasano, MD, PhD
Toronto Western
Pedro Gonzalez-Alegre, MD, PhD
University of Pennsylvania
Mark Hallett, MD
National Institute of Neurological Disorders and Stroke
Ellen Hess, PhD
Emory University
Niccolo Mencacci, MD, PhD
Northwestern University
Terence Sanger, MD, PhD
University of Southern California
Aasef Shaikh, MD, PhD
Case Western Reserve University
Roy Sillitoe, PhD
Baylor College of Medicine
Veronique VanderHorst, MD, PhD
Harvard University
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
Federal Liaison
The Leon Fleisher Foundation for 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 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 Leon Fleisher Foundation for Musicians Advisory Board and the Leon Fleisher Foundation for Musicians Medical Advisory Committee.
The Musicians Medical Advisory Committee provides input to the DMRF 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@dystonia-foundation.org
Leon Fleisher Foundation for Musicians With Dystonia Advisory Board
Glen Estrin
President & Co-Founder
Leon Fleisher, in memoriam
Dale Clevenger
Glenn Dicterow
Gary Graffman
Alex Klein
Alan Menken
Peter Nero
Peter Oundjian
Pinchas Zukerman
Leon Fleisher Foundation for 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.
Ginny Bryan
Jacquelyn Coello
Beth S. Farber
Karen A. Flanagan
James A. Metherell
Melissa Phelps
Shanna Schmitt
Rosemary Young
Content for the Dystonia Dialogue newsletter is guided by a volunteer Editorial Board:
Barbara Kessler, Chair
Ed Cwalinski
Paul Kavanaugh
Dee Linde
Allison London
Anneliese Ornelis
Diane Rudolph
Paula Schneider
A professional staff administers the daily operations for the DMRF.
Each staff person is committed to meeting the needs of the dystonia community.
Janet Hieshetter
Executive Director
Veronica Diaz
Manager of Community Engagement
Debbie Durrer
Director of Development
Jessica Feeley
Director of Communications & Education
Jennifer McNabola
Director of Finance
Martha Murphy
Brain Bank Liaison
Emma Pinto
Associate Director of Development & Database Management
Jody Roosevelt
Science and Technology Manager
Jan Teller, MA, PhD
Chief Scientific Advisor