Our Team
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.
Board of Directors
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-Founders
Samuel Belzberg (1928-2018) and Frances Belzberg (1927-2026)
Lifetime Honorary Director
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
- Brett Ewald, PhD
- 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 Strawgate Rudolph
- Laura Subin
- Chris Von Der Ahe
- Joel S. Perlmutter, MD, Scientific Director, ex officio
- Billy McLaughlin, Awareness Ambassador, ex officio
- Janet Hieshetter, Executive Director, ex officio
Medical & Scientific Advisory Council
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 - Robert Chen, MA, MBBChir, MSc, FRCPC
University of Toronto - Darius Ebrahimi-Fakhari, MD, PhD
Boston Children’s Hospital - Mark Edwards, MBBS, PhD
King’s College London - Alberto Espay, MD
University of Cincinnati - Stewart Factor, DO
Emory University - Aryn Gittis, PhD
Carnegie Mellon University - Pedro Gonzalez-Alegre, MD, PhD
University of Pennsylvania - Kathryn Peall, MD, PhD
Cardiff University - Marta San Luciano, MD
University of California- San Francisco - Meike van der Heijden, PhD
Virginia Tech University - Michael Zech, MD
Technical University of Munich - H.A. Jinnah, MD, PhD – ex officio
Principal Investigator, Dystonia Coalition
Leon Fleisher Foundation for Musicians with Dystonia
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: [email protected]
Leon Fleisher Foundation for Musicians With Dystonia Advisory Board
- Glen Estrin
President & Co-Founder - Leon Fleisher, in memoriam
- Glenn Dicterow
- Gary Graffman, in memoriam
- 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, in memoriam
- Hans-Christian Jabusch, MD
- Richard Lederman, MD, PhD
- Mark Lew, MD
Community Leadership Council
he 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
Editorial Board
Content for the Dystonia Dialogue newsletter is guided by a volunteer Editorial Board:
- Barbara Kessler, Chair
- Daria Dragicevic
- Paul Kavanaugh
- Dee Linde
- Allison London
- Diane Rudolph
- Donna Russow
- Brad Schmitt
- Paula Schneider
- Laura Subin
Staff
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 - Sandra Awuzie
Operations Coordinator - Veronica Diaz
Manager of Community Engagement - Geena Fritzmann
Grants Manager - Robyn Kurth
Director of Communications and Outreach - Jeannie Lukow
Chief Development Officer - Jennifer McNabola
Director of Finance - Martha Murphy
Information Coordinator and Brain Bank Liaison - Kenyatta Wooten
Database Coordinator - Jonathan W. Mink, MD, PhD
Chief Science Officer - Jan Teller, MA, PhD
Chief Scientific Advisor
