• Davide became a registered member 6 months ago

    • Welcome, Davide! We are so glad you have become a member of the FA Forums. We look forward to hearing your perspective!

    • Hi Davide,
      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, for any questions you may have feel free to reach out to @christina-logan.

      • Yes, I have the disease diagnosed since I was 8 so I understand well all the problems it brings and everything that goes around, however I am a person who has never given up and who is strongly convinced in a turning point. For example, I’m talking by email with jhon Hopkins that I found out he really has a specific department for ataxia and come right to the usa, I want to be close to all things related to ataxia, dating, trials, I want to be useful in 1st person even if I’m 23 years old

        • Hi Davide, my brother is being treated at Carlo Besta, but he would like to change neurological institute.
          Are you the cure? Are the researchers following you in contact with the European research group that is collaborating in the research with omevaxolone?

          • As far as I know, oomaveloxone was also experienced at Besta, on some patients who had the disease recently because to be accepted into the trial you had to have excellent physical requirements and this is not my case; I point to be treated at jhon Hopkins in Baltimore for September

            • they don’t even update us on research in progress, nothing! Are you still at the Carlo Besta? so would you go to Baltimore on tips from who follow you?

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