I had to bite my lip to keep from screaming as I watched my 14-year-old daughter, Amelia, who has Friedreich’s ataxia (FA), roll onto the basketball court. I’m constantly navigating a fine line between being a supportive mom and an embarrassing parent. Amelia is a teenager, after all. Her…
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Use of the experimental gene therapy LX2006 is generally safe and appears to improve or stabilize markers of heart health among people with Friedreich’s ataxia (FA). That’s according to newly published data from two early clinical trials that tested the one-time infusion therapy in a small number of…
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My husband, Dave, and I have been trying to think of fun, inexpensive things to do this summer. That sounds simple, but my disability from Friedreich’s ataxia (FA) makes it complicated. Sometimes the hardest part of disability is the way it changes ordinary pleasures. We live near the ocean…
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Two microRNAs (miRNAs) — molecules that help regulate gene activity — may serve as biomarkers of cardiomyopathy in people with Friedreich’s ataxia (FA), according to results of a recent study. Combining the levels of these two miRNAs, called miR-323a-3p and miR-625-3p, into a single predictive model showed strong ability…
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I heard a story on the radio a few days ago about wheelchair repair. It was one I could relate to. Because I have Friedreich’s ataxia (FA), I use a wheelchair. Recently, it took more than a month to replace a small, nonessential part of my chair. I…
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When you have school-age kids, summer can be quite an adventure. Establishing sustainable and achievable routines that will serve me and my Friedreich’s ataxia (FA) is a priority when summer arrives to my home each year. Since we no longer have homework or alarm clocks to mind for a…
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Becoming educated and informed about FA is a good first step. Here you’ll find general information about the disease, including diagnosis, symptoms, and causes.
It helps to know others have been where you are now. Here’s a collection of our columnists’ words of wisdom to help you along on your FA journey.
There is no cure for FA yet, but here you can find more information about current therapeutic approaches, as well as experimental treatments that are in the pipeline.
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