About Us
Battling Stronger, Together
The mission of the Together Strong NPC Foundation is to provide project financial support to organizations representing scientists, academics and patients that focus on Niemann-Pick Disease, Type C (NPC). Funding priorities include fostering innovative research, improving treatment and supporting the community of patients, families and care givers impacted by the disease.
Foundation Purpose and Goals:
NPC Science
Develop foundational science to benefit NPC patients; advance research and development projects that focus on discovery, identification of therapeutic targets, and improved diagnostics
Public Awareness and Advocacy
Enable stronger independent patient advocacy organizations focused on NPC: improve and advance their capabilities to execute their unique missions
Collaboration and Information Sharing
Foster international collaboration among scientists, clinicians and patient advocacy organizations to disseminate new information, treatment guidelines and clinical resources, and develop programs to train health professionals who treat NPC patients.
Board Members
Steven A. Silber, MD, Chairman
CEO, CryBioMedicines, LLC
Ellen Klein, President
Frank Pfrieger, Chairman-Scientific Advisory Board
Group Leader, Institute of Cellular and Integrative Neurosciences
Doug Berns, Chairman-Patient Advisory Board
Jayne Gershkowitz, Chief Patient Advocate, Amicus Therapeutics
Olaf Bodamer,
Associate Professor of Pediatrics
Boston Children's Hospital/Harvard Medical School
Joe Kennedy, Treasurer/Secretary