• Heather Deville became a registered member 9 months, 3 weeks ago

    • Hey Heather,
      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. You’re an important part of our community! Please feel free to browse our topics and share your opinion. Remember, me and Frankie, the other moderator, are here to answer any questions you may have, so feel free to reach out to us! @matthew-lafleur, @frankie-perazzola

      • Thanks for letting me join! I have been diagnosed with FA since 2013 when I was 49, symptoms started in my 40’s so very late on-set compared to most. I am still able to walk with the use of a rollator but things are getting more difficult and taking longer to do. I have taken part in a small trial of the drug G-CSF to see if it will have any benefits and currently waiting to hear the results and if it will go further. I will post anything I hear on here!
          • Wow, I’ve never heard of that drug. Please keep us updated!
              • Will do. If you look on the FARA research pipeline chart it is right at the bottom under stem cell therapy. I see Dr. Wilkins as an outpatient too so get to know what is happening. FARA along with Ataxia UK provided funding for the small study, but if it is to go further then a bigger budget will be needed so may take a while.
          • Hi Heather!Thank you for signing up and welcome to the FA forum!

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