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Jessie Beatty

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@jessbeatty

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    Jessie Beatty replied to the topic Most Promising Treatment Option (Opinion) in the forum Living with FA 1 year, 4 months ago

    Shandra, thanks for your explanation. I have have wondered if some of the potential treatments might just be bandaids for symptoms.

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    Jessie Beatty replied to the topic Is FA research speeding up, or is it just me? in the forum FA Research, Scientific News, & Clinical Trials 1 year, 4 months ago

    Matthew, Thank you, so glad to have this. I get good info from these forums and reading what other people are saying about a treatment keeps my sprits up. It seems it’s not just me that feels like we really have some hope. I just want that treatment NOW!! How long ago would you say the research for a treatment for FA has picked up speed? Has it…[Read more]

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    Jessie Beatty replied to the topic Sickness with FA when Seasons Change in the forum Living with FA 1 year, 4 months ago

    My daughter gets sick this time every year. She just missed 7 days of school because of a cold/sinus infection. Thankfully we did not have to see her pediatrician this time. The worst part for her is not really the cold its the recovery from the cold. It takes weeks for her to get her strength/stamina back. I HATE sending her to school during…[Read more]

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    Jessie Beatty's profile was updated 1 year, 5 months ago

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    Jessie Beatty changed their profile picture 1 year, 5 months ago

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    Jessie Beatty replied to the topic Is FA research speeding up, or is it just me? in the forum FA Research, Scientific News, & Clinical Trials 1 year, 7 months ago

    I have only known my daughters diagnosis since October 2018, but from all the news and the research I have seen, I truly feel they will find a cure or at the very least a treatment to slow progression. I am realist, I try to not get overly positive about all the news on drug developments but I truly feel a treatment is close.

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    Jessie Beatty replied to the topic Etravirine… in the forum FA Research, Scientific News, & Clinical Trials 1 year, 8 months ago

    Since Etravine is already a safe prescribed med for HIV, will it take as long as a new med wold take to be approved for FA patients? Would Etravine for FA need to go through all the FDA steps for approval? I want to know how to get it for my daughter now. if I need to travel to another country to buy the med I will. Please let me know if anyone…[Read more]

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    Catherine Vasquez Ortiz and Profile picture of Jessie BeattyJessie Beatty are now friends 1 year, 9 months ago

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    Jessie Beatty replied to the topic RTA 408- MOXIe/ Reata Clinical trial in the forum FA Research, Scientific News, & Clinical Trials 1 year, 9 months ago

    Can you tell me where you read the published results from the part 1 trial? I have researched this a ton but want to make sure what I have read already is the most up to date info. Do you know if Dr. Lynch is involved with this study? From what I have researched this drug sounds promising. I want to be positive about this study but I am also…[Read more]

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    Jessie Beatty became a registered member 1 year, 9 months ago

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      Frankie Perazzola replied 1 year, 9 months ago

      Hey Jessie! Thank you for signing up and welcome to the FA forum!

    • Profile picture of Matt Lafleur
      Matt Lafleur replied 1 year, 9 months ago

      Hey Jessie,
      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]

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