Foundation Leadership

- EXECUTIVE and FOUNDING DIRECTOR -
Estelle L. Benson

- FOUNDATION OFFICERS -
President - Sara Voorhees Pessel, PMP
Vice-President - Joel Steinberg, MD, PhD
Secretary - Sue D. Baier
Treasurer - Henry Friedman

- HONORARY BOARD -
Rachel Chagall
Marjorie H. Downey
Andy Griffith
Joseph Heller*

- BOARD of TRUSTEES-
William T. Gaffney
Barbara Hoffman
Ronald B. Kremnitzer
Wayne D. Mitchell*
Ralph G. Neas, Esq.
C. Walter Nichols, III
Marilyn Tedesco

- BOARD of DIRECTORS -
Sue D. Baier
Robert Benson, CLU, ChFC
Tom Butler
Patricia H. Blomkwist-Markens
Patricia Bryant
Elizabeth Emerson
Henry Friedman
Thelma Gifford, RN
Jerry R. Jones
Susan Keast
Phil Kinnicutt
Kim Koehlinger
Harriette Lion
Sara Voorhees Pessel, PMP
Glennys Sanders
Laura E. Stegossi, Esq.
Joel S. Steinberg, MD, PhD
John F. Schilke, MD

- MEDICAL ADVISORY BOARD -
Barry G. W. Arnason, MD
Arthur K. Asbury, MD
Richard J. Barohn, MD
Mark J. Brown, MD
Kopel Burk, MD
David Cornblath, MD
Jonathan Goldstein, MD
Kenneth C. Gorson, MD
Michael G. Graves, MD
John W. Griffin, MD
Angelika F. Hahn, MD
Hans-Peter Hartung, MD
Thomas L. Hedge, Jr., MD
Professor R.A.C. Hughes
Jonathan S. Katz, MD
Carol Lee Koski, MD
Richard A. Lewis, MD
Robert Lisak, MD
Robert G. Miller, MD
Gareth J. Parry, MD
Allan H. Ropper, MD
John T. Sladky, MD
Joel S. Steinberg, MD, PhD
Pieter A. van Doorn, MD
Professor Hugh J. Willison

- MEMBER -
National Organization for Rare Disorders, Inc. (NORD)
Pennsylvania Coalition of Citizens with Disabilities
National Coalition for Research in Neurological Disorders
Research! America

*Deceased

Non-Profit 501(c)(3)
Official registration and financial information may be obtained
from the PA Department of State by calling toll free, within PA,
1-800-732-0999. Registration does not imply endorsement.