Leadership

Executive Director

Lisa Butler

Foundation Officers

Jim Crone – President

Matthew LaRocco  –  Vice President

Patricia H. Blomkwist-Markens – Vice President of International Activities

Susan Keast – Treasurer

Russell Walter – Secretary

Board of Directors

David R. Cornblath, MD

Kenneth C. Gorson, MD

K. Robert Doehrman

Elizabeth Emerson

Joel Steinberg

Marilyn Tedesco

Jim Yadlon

Gail Moore

Dominick Spatafora

Shane Sumlin

Members

National Organization for Rare Disorders, Inc. (NORD)

National Coalition for Research in Neurological Disorders

Research! America

Founder

Estelle L. Benson