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

Shane Sumlin

Josh Baer


National Organization for Rare Disorders, Inc. (NORD)

National Coalition for Research in Neurological Disorders

Research! America


Estelle L. Benson