Executive Director
Lisa Butler
Foundation Officers
Jim Crone – President
Matthew LaRocco – Vice President
Patricia H. Blomkwist-Markens – Vice President of International Activities
Susan Keast – Treasurer
Russell Walter – Secretary
Board of Directors
David R. Cornblath, MD
Kenneth C. Gorson, MD
K. Robert Doehrman
Elizabeth Emerson
Joel Steinberg
Marilyn Tedesco
Jim Yadlon
Gail Moore
Dominick Spatafora
Shane Sumlin
Members
National Organization for Rare Disorders, Inc. (NORD)
National Coalition for Research in Neurological Disorders
Research! America
Founder
Estelle L. Benson