Forum Replies Created

  • Bart-Jan

    Member
    March 24, 2020 at 11:55 am in reply to: Stay At Home Effect

    Sure, based in Germany, we have ‘at home’ now for 2 weeks now and in fact my FAer daughter has been skipping school for 4 now.

  • Bart-Jan

    Member
    February 25, 2020 at 10:17 am in reply to: Using smart watches to track your health

    We are using an Apple Watch/iPhone Xr and so far our experiences are really good. Including positiv feedback from our cardiologist: he really appreciated the Apple Health reports about activity tracking, heart rate report, as well as the EKGs the Apple Watch can generate.

  • Bart-Jan

    Member
    November 19, 2019 at 11:53 am in reply to: International Ataxia Research Conference (IARC)

    I attended.
    Was super cool: over 400 attendees, 300 posters, and I was not the only FA-parent 🙂
    Met old friends, made new friends.
    Reata was there! Working on the next steps for Omaveloxolone.
    New research, check out OSA.
    Gen therapies for FA going strong,

  • Bart-Jan

    Member
    August 27, 2019 at 9:08 am in reply to: Smart Watches

    My daughter uses an Apple Watch.
    Tracks activity, heart rate, etc.
    Feedback from her (pediatric) cardiologist also has been very positive.

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