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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For most of my life with Friedreich’s ataxia (FA), hope felt distant. When I was diagnosed back in 1994, information about this weirdly named disease was difficult to find. The idea of treatment existed mostly in the language of “someday,” and even that felt optimistic. Many of us in…
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A Phase 2 clinical trial testing Lexeo Therapeutics’ gene therapy LX2006 in people with Friedreich’s ataxia (FA) and the heart condition cardiomyopathy expects to enroll its first participant by the end of the month, the company said. The SUNRISE-FA 2 study is a pivotal trial, with data…
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I spent most of last week providing the state with documentation of two things I already live with every day: my disability and my need for assistance. I am disabled because I have Friedreich’s ataxia (FA). I was doing it for a state program that offers loans with…
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A few years ago, I heard some advice about the power of perspective. It was framed as parenting advice, but it translates so well to nearly every life-planning situation. Julie Richard, founder of the Fearless Mom ministry, explained that the “most common question I get is, ‘I don’t want…
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Biogen’s Skyclarys (omaveloxolone) is one step closer to being covered by Quebec public healthcare systems for people with Friedreich’s ataxia (FA), ages 16 and older, with the province’s Institut national d’excellence en santé et en services sociaux’s (INESSS) re-evaluation of the therapy after initially declining to recommend it.
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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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