• Davide posted a new activity comment 3 months, 3 weeks ago

    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?

  • For the information in my possession always talking to researchers and doctors, oveloxone could really be a turning point as well as it could do little in people with more years of Ataxia, I explain better: the drug experimentation was done on people who were “better” because they had to meet high standards, as soon as (I hope as possible) it will…[Read more]

  • Davide changed their profile picture 4 months, 2 weeks ago

  • Davide posted a new activity comment 4 months, 2 weeks ago

    My perspective is good, much good

  • Davide posted a new activity comment 4 months, 2 weeks ago

    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…[Read more]

    • 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?

  • Hello, I am a 23-year-old Italian boy suffering from Friedrich’s Atassia who would like to come to the USA to start the omaveloxone treatment that should be marketed soon, but I would always need a family to assist me or a center because I am not independent. If you could even provide me with contacts or information if you have any because I don’t…[Read more]

  • Davide became a registered member 4 months, 3 weeks 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 ou…[Read more]

      • 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…[Read more]

        • 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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