Interim Executive Director

Lisa Butler

Foundation Officers

Santo Garcia РPresident

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

K. Robert Doehrman – Vice President

Ginger Crooks – Treasurer

Jim Crone РSecretary

Phil Kinnicutt – Past President

Board of Directors

David R. Cornblath, MD

Elizabeth Emerson

Jeffry Gerland

Susan Keast

Laura E. Stegossi, Esq.

Joel Steinberg

Marilyn Tedesco

Kassandra Ulrich

Russell Walter

Jim Yadlon

Members

National Organization for Rare Disorders, Inc. (NORD)

National Coalition for Research in Neurological Disorders

Research! America

Founder

Estelle L. Benson