Last in a series. Read part one. After a traumatic whirlwind of a day, a sleepless night, and surgery to repair my broken hip, I woke up in the postoperative room. That’s always disorienting because you have no clue how much time has passed, how the surgery went, what…
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Four years of daily treatment with Skyclarys (omaveloxolone) continues to slow the progression of Friedreich’s ataxia (FA) compared to what would be expected in patients without treatment. That’s according to new data from the extension study of the Phase 2 MOXIe clinical trial (NCT02255435), which also showed…
I’ve been reading “The Book of Delights” by Ross Gay. In it, he describes the small, everyday experiences that bring him joy. I am trying to follow that example, but, unlike Gay, I don’t write down my delights. With Friedreich’s ataxia (FA), the physical act of writing is extremely…
Everywhere I look, I see advertisements on billboards, computer monitors, and even at the pump telling me what I should buy and how I’m missing out on having certain things. We are bombarded by it. We don’t hear as much about personal finance, however. Discussing that often leaves me feeling…
Bill Nye is back in the lab, with the host of the popular 1990s science education TV show “Bill Nye the Science Guy” now starring in a National Ataxia Foundation (NAF) campaign focused on raising awareness and understanding of Friedreich’s ataxia (FA). FA is a rare, inherited, and progressive disorder. It…
Daily use of the experimental therapy nomlabofusp is leading to long-term clinical improvements and increases in frataxin levels for people with Friedreich’s ataxia (FA) relative to what would be expected in the absence of treatment. That’s according to new data from an ongoing open-label extension study (NCT06447025)…
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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