Leadership

Executive Director

Lisa Butler

Foundation Officers

Jim Crone – President

Matthew LaRocco  –  Vice President

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

Russell Walter – Secretary

Jim Yadlon – Treasurer

Board of Directors

Kenneth C. Gorson, MD

Elizabeth Emerson

Gail Moore

Dominick Spatafora

Shane Sumlin

Josh Baer

Members

National Organization for Rare Disorders, Inc. (NORD)

National Coalition for Research in Neurological Disorders

Research! America

Founder

Estelle L. Benson