The FARA Ambassadors are a group of people living with FA who are committed to supporting FARA in the search for a treatment and cure.  Together we seek to know more about FA, and FARA so we can be prepared to represent the community when the opportunity arises; speaking at events, to volunteers, potential donors, scientific groups, pharma partners, media interviews etc.

The Mission of the FARA Ambassador's Group is to support FARA by:

  • Being leaders in the FA community.
  • Representing FARA whenever possible.
  • Sharing and finding different opportunities to share our personal stories with new and existing audiences.
  • Educating ourselves and others about the scope and impact FARA has on our lives, communities and beyond.


  • To support each other as a team.
  • To have meetings via the web during which we will:
    • Discuss our stories.
    • Discuss opportunities to generate interest in FARA.
  • To have each member speak at FARA events.
  • To continuously tighten our bond as a group.
  • To have fun.


This blog is a vehicle for the voice of the FARA Ambassadors group and will feature posts from FARA Ambassadors on a wide range of topics.