Bart-Jan replied to the topic Stay At Home Effect in the forum Coronavirus (COVID-19) and FA 3 years, 2 months ago
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 replied to the topic Using smart watches to track your health in the forum Nutrition, Supplements, and Exercise 3 years, 3 months ago
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 replied to the topic International Ataxia Research Conference (IARC) in the forum Living with FA 3 years, 6 months ago
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 replied to the topic Smart Watches in the forum Assistive Device Usage 3 years, 9 months ago
My daughter uses an Apple Watch.
Tracks activity, heart rate, etc.
Feedback from her (pediatric) cardiologist also has been very positive.
Bart-Jan posted a new activity comment 4 years, 4 months ago
Bart-Jan became a registered member 4 years, 4 months ago
Hey Bart-Jan, thanks so much for joining!
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 a…[Read more]
Hey Bart- Jan! Thank you for signing up and welcome to the FA forum!