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
Gail Moore
Shane Sumlin
Josh Baer
Nancy Di Salvo
Members
National Organization for Rare Disorders, Inc. (NORD)
National Coalition for Research in Neurological Disorders
Research! America
Founder
Estelle L. Benson