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…
Alyssa Hammers and her healthcare providers had been trying to determine the cause of her coordination problems, without success. Then, her cousin showed her a TikTok video about living with Friedreich’s ataxia (FA). Hammers immediately recognized the similarities to her symptoms. Despite initial skepticism from her neurologist, Hammers was…
Living with Friedreich’s ataxia (FA) can make managing daily activities and maintaining independence more difficult, especially as the disease progresses over time. For example, tremors or other FA symptoms can interfere with getting dressed, cooking, or brushing teeth. Elizabeth Foss, an occupational therapist and one of the…
When you’re living with Friedreich’s ataxia (FA), maintaining independence can become more challenging over time due to mobility challenges and other symptoms. At the 2026 Annual Ataxia Conference (AAC) in Orlando, Florida, the session “Rehabilitation Strategies & Mobility Devices” discussed the value of exercise in the management of ataxias, including…
Brain scans of people with Friedreich’s ataxia (FA) revealed reduced communication between the frontal cortex and the cerebellum, two-interconnected brain regions involved in planning and coordinating voluntary movement, a pattern that was tied to greater physical disability and cognitive difficulties. At the same time, connections within the cerebellum and between…
Living with Friedreich’s ataxia (FA) often involves fatigue, a sense of profound exhaustion that can affect your independence and quality of life. A session presented at the 2026 Annual Ataxia Conference (AAC) in Orlando, Florida, offered practical advice for managing this common symptom of FA and…
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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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