Executive Director

Kenneth T. Singleton

Foundation Officers

Philip Kinnicutt – President

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

K. Robert Doehrman – Vice President

Ginger Crooks – Treasurer

Santo Garcia – Secretary

Board of Directors

Sue Baier

David R. Cornblath, MD

Jim Crone

Santo Garcia

Susan Keast

Joel Steinberg

Laura E. Stegossi, Esq.

Marilyn Tedesco

Kassandra Ulrich

Members

National Organization for Rare Disorders, Inc. (NORD)

National Coalition for Research in Neurological Disorders

Research! America

Founder

Estelle L. Benson