I’ve been mostly using a wheelchair for more than eight months, after relying on a walker or rollator for seven years, so I’ve done a fair amount of explaining to people what Friedreich’s ataxia (FA) is and what living with it is like. Explaining FA — what…
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Since writing my last column, I’ve been struggling to find hope after being denied participation in a gene therapy clinical trial. That may seem strange coming from me, since most of my writing over the years has been about the stubborn kind of hope that people living with…
Doctors’ early diagnosis of advanced heart failure in a man with Friedreich’s ataxia (FA) allowed for timely multidisciplinary evaluation that made heart transplant a viable and successful treatment option, according to a U.S. case report. More than two years after surgery, the man “continues to do well, living with his…
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Today I went into my kitchen to make a chicken sandwich with cheese, which sounded like the perfect idea for lunch. Fresh bread, some lettuce, a little mayo, salt and pepper — all these ingredients would make my sandwich sing. First, I pulled the ingredients out of the fridge. My…
A hotel ballroom in Orlando filled with laughter as comedian Fiona Cauley performed at the banquet on the final night of the 2026 Annual Ataxia Conference (AAC). The audience responded enthusiastically to her set, which drew on personal experience. Cauley, who is living with Friedreich’s ataxia (FA) and…
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Living with a visible disability caused by Friedreich’s ataxia (FA) is no simple feat. It takes a lot of trust to simply get out of bed. I have to trust that the Skyclarys (omaveloxolone) I take every morning will have more benefits than side effects, and that my…
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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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