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.

Board of Directors

  • Jeff Levenson, Co-President
  • Emil Weiss, Co-Founder and Co-President
  • Deberah Goldman, Vice President
  • Art Glassman, Treasurer
  • Beth Katz, Secretary
  • Paul Ashley
  • Michael Canmann
  • Susan Coddon
  • Harriet Saxe
  • David Epstein, Director Emeritus
  • Jonathan Fram, Director Emeritus


  • Robert Dorsky, DMD
    APBDRF’s Pharmaceutical Development Committee
  • Gary Epstein, Google Ad Words Volunteer
  • Leslie S. Leighton, MD, PhD, FACG
    APBDRF’s Pharmaceutical Development Committee
  • Noelle Lynch
    Student Intern, Columbia University, Dept. of Genetic Counseling
  • Olivia Montana (PROS Foundation)
  • Faye Rosenberg, Social Media Volunteer

Consultants and Staff

  • Natacha T. Pires, MBBS, MS, Executive Director
  • Gabriel Baril, Website Manager
  • Anessa Kajtazovic, Community Affairs Officer
  • James Meier, Organizational Consultant
  • Sharon Steinberg, Executive Assistant

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