Board Members, Volunteers, and Part-Time Staff

The APBD Research Foundation is governed by a Board of Directors, assisted by an Advisory Council and committees, which are committed to furthering research on APBD, promoting awareness in the medical community and the public, and supporting patients with the disease.


  • Emil Weiss
  • Jeff Levenson

Board Members

  • David Epstein, Treasurer
  • D Goldman, Vice President
  • Harriet Saxe, Secretary
  • Susan Coddon


  • Catherine Fanning – Chair of APBD Research Foundation Pharmaceutical Development Committee
  • Robert Dorsky, D.M.D. – APBD Research Foundation Pharmaceutical Development Committee
  • Olivia Montana – PROS Foundation
  • Faye Rosenberg
  • Dinah Grazi

Consultants and Part-Time Staff

  • James Meier – Organizational Consultant
  • Sharon Steinberg – Part-Time Executive Assistant
  • Erin Stevens – Communications and Development Manager
  • Erin Chown – Rare Disease Research Coordinator
  • Natacha Pires – Special Projects Coordinator

To contact a specific member of the Board, please e-mail and include their name in the subject of the message.