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.

Samuel Belzberg

Honorary Chair & Co-Founder
Frances Belzberg

Lifetime Honorary Directors
Mahlon R. DeLong, MD, Scientific Director Emeritus
Stanley Fahn, MD

Board of Directors

Mark Rudolph

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

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
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

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:
[email protected]

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

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
Shanna Schmitt
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

Jeane Emily DuBose
Manager of Science and Technology

Debbie Durrer
Director of Development

Julie Gurdal
Data and Operations Coordinator

Heather Henstock
Director of Communications and Outreach

Jennifer McNabola
Director of Finance

Martha Murphy
Brain Bank Liaison

Emma Pinto
Senior Associate Director for Marketing and Data Management

Chief Scientific Advisor
Jan Teller, MA, PhD