FSR is excited to announce that our Executive Director, Ginger Spitzer, is now on the Global Genes Foundation Alliance Leadership Council!


Global Genes is an organization that seeks to connect, empower and inspire the rare disease community. Similar to FSR they work to advance research in the rare disease space while providing patients with the support they need. Since 2008, Global Genes has: 

Graphic from Global Genes

The Global Genes Foundation Alliance is a collection of nonprofits, government agencies, academic institutions, research institutions and service and industry organizations that are all collaborating to create change in the rare disease space. The Foundation Alliance is made up of more than 500 rare disease organizations, including the Foundation for Sarcoidosis Research.

As a member of the Leadership Council for the Foundation Alliance, Ginger will provide resources, insight and strategic advice relating to the Foundation Alliance. This will ensure that sarcoidosis patient always have a strong voice representing them. The other board members include:


  • Danny Miller, founder, MEPAN Foundation
  • Katie Stevens, Executive Director, Team Telomere
  • Kelly Trout, Board Chair and Director of Research and Medical Advocacy, International WAGR Syndrome Association
  • Marni Cartelli, chair of Advocacy Committee, RSDSA
  • Melissa Bryce Gamble, Executive Director and co-founder, Global Foundation for Peroxisomal Disorders
  • Nathan Peck, Founder and CEO, Cure VCP Disease, Inc.
  • Sarah Chisholm, President and Director, BPAN Warriors
  • Tuesdi Dyer, Executive Director, CFC International