• Hi I am a mother of a 10 yr old who was diagnosed 3 years ago but showed some signs since probably around 5. I live in Canada. Our system does not prescribe anything for FA specifically. We went to Pensilvania to see a research doctor who is familiar with about 300 cases. He recommended Idebenone – it used to be prescribed in Canada and the…[Read more]

  • MelodieAB became a registered member 1 year, 6 months ago

    • Hey Melodie, thanks for joining us!
      Thanks for joining the FA Forums! I’m grateful that you signed up, because one of the most difficult part of FA to deal with is how rare it is — not many people seem to understand! So you are helping us create a place where people affected by FA can share advice and information directly with one another. Y…[Read more]