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