People
DMRF is a community
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.
Co-Founder
Samuel Belzberg
(1928-2018)
Honorary Chair & Co-Founder
Frances Belzberg
Lifetime Honorary Directors
Stanley Fahn, MD
Board of Directors
Mark Rudolph
President
Richard A. Lewis, MD
Vice President of Science
Barbara Kessler
Vice President of Awareness & Activities
Paula Schneider
Vice President of Support
Carole Rawson
Vice President of Public Policy
Karen K. Ross, PhD
Vice President of Mental Health Programming
Ronald Hersh
Vice President of Development
Sandra Weil
Network Liaison
John Downey
Treasurer
Directors
Jon Davis
Donna Driscoll
Marilynne Herbert
Erwin Jackson, PhD
Stefanie Jackson
Brian Keane
Art Kessler
Dennis Kessler
Dan Lewis
Rosalie Lewis
Allison London
Marc Miller
Robin Miller
Liz Rawson
Diane Rudolph
Chris Von Der Ahe
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
Brian Berman, MD
Virginia Commonwealth University
Noreen Bukhari-Parlakturk, MD, PhD
Duke University
Aloysius Domingo, MD
Massachusetts General Hospital
Stewart Factor, DO
Emory University
Pedro Gonzalez-Alegre, MD, PhD
University of Pennsylvania
Mark Hallett, MD
National Institute of Neurological Disorders and Stroke
Zelma Kiss, MD, PhD
Hotchkiss Brain Institute
Andrea Kühn, MD
Charite – University Medicine Berlin
Mark LeDoux, MD, PhD
Veracity Neuroscience LLC
G.W. Gant Luxton, PhD
University of California, Davis
Scott Norris, MD
Washington University
Samuel Pappas, PhD
University of Texas Southwestern
Rekha Patel, PhD
University of South Carolina
Kathryn Peall, MD, PhD
Cardiff University
David Peterson, PhD
University of California San Diego
Sarah Pirio Richardson, MD
University of New Mexico
Marta San Luciano, MD
University of California- San Francisco
Michael Zech, MD
Technical University of Munich
Cynthia Comella, MD – ex officio
Rush University Medical Center/Dystonia Study Group
H.A. Jinnah, MD, PhD – ex officio
Principal Investigator, Dystonia Coalition
Sophie Cho, 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:
mu*******@dy*****************.org
Leon Fleisher Foundation for Musicians With Dystonia Advisory Board
Glen Estrin
President & Co-Founder
Leon Fleisher, in memoriam
Glenn Dicterow
Gary Graffman
Alex Klein
João Carlos Martins
Alan Menken
Peter Nero, in memoriam
Peter Oundjian
Gabriel Radford
Pinchas Zukerman
Leon Fleisher Foundation for Musicians with Dystonia Medical Advisory Committee
Steven Frucht, MD
Chair and Co-Founder
Blair Ford, MD, in memoriam
Eckart Altenmuller, MD
Nancy Byl, PT, PhD
Michael Charness, MD
David Eidelberg, MD
Stanley Fahn, 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, Chair
Ginny Bryan
Kristin Cinglie
Jacquelyn Coello
Karen A. Flanagan
Jillian Johnson
Dee Linde
James A. Metherell
Melissa Phelps
Hannah Thompson
Rosemary Young
Content for the Dystonia Dialogue newsletter is guided by a volunteer Editorial Board:
Barbara Kessler, Chair
Ed Cwalinski
Daria Dragicevic
Paul Kavanaugh
Dee Linde
Allison London
Diane Rudolph
Donna Russow
Brad Schmitt
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
Geena Fritzmann
Grants Manager
Robyn Kurth
Director of Communications and Outreach
Kris Mayer
Database Coordinator
Jennifer McNabola
Director of Finance
Martha Murphy
Information Coordinator and Brain Bank Liaison
Kate Riddle
Senior Associate Director of Development
Chief Scientific Advisor
Jan Teller, MA, PhD