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.

Honorary Chair & Co-Founder
Frances Belzberg

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

Board of Directors

Art Kessler

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

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

Andrea Kühn, MD
Charite – University Medicine Berlin

G.W. Gant Luxton, PhD
University of California, Davis

Scott Norris, MD
Washington University

Niccolo Mencacci, MD, PhD
Northwestern University

Sarah Pirio Richardson, MD
University of New Mexico

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:

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
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
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

Chief Scientific Advisor
Jan Teller, MA, PhD