Leadership

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

Jeffrey Allen, MD

Josh Baer

Nancy Di Salvo

Peter Donofrio, MD

Brenda Perales

Dave Rosner

Shane Sumlin

Corbin Whittington

Members

National Organization for Rare Disorders, Inc. (NORD)

National Coalition for Research in Neurological Disorders

Research! America

Founder

Estelle L. Benson