Here in the United States, fall is back-to-school season — something I’m very aware of as the mom of two elementary-age children. This year, the logistics of this season have looked different for my family and me, thanks to our community. Because my balance has been deteriorating due to…
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The investigational therapy nomlabofusp increased the levels of frataxin, the protein deficient in people with Friedreich’s ataxia (FA), in several tissues of animal models, and improved heart function and survival in an FA mouse model, a study showed. The findings are consistent with benefits of the Larimar…
I recently told my husband, Dave, a silly dad joke, but I had to repeat the punchline three times. By that point, it wasn’t even funny — if it ever was. Dave was simply trying to understand me, but I was frustrated that I had to put so much effort…
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…
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…
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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