Executive Director

Lisa Butler

Foundation Officers

Jim Crone – President

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

Russell Walter – Secretary

Jim Yadlon – Treasurer

Board of Directors

Kenneth C. Gorson, MD

Gail Moore

Shane Sumlin

Josh Baer

Nancy Di Salvo


National Organization for Rare Disorders, Inc. (NORD)

National Coalition for Research in Neurological Disorders

Research! America


Estelle L. Benson