A new documentary chronicling the story of two men with Friedreich’s ataxia (FA) as they undertake a seemingly impossible athletic endeavor — cycling across mountains, with a rare muscle disease — will premiere at a film festival in California later this month. The movie, “The Highest Road,” is…
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Lately, it seems like my journey with Friedreich’s ataxia (FA) has been a major focus of my life. Between sustaining three fractures in nine months, meeting new people, and refusing to let my symptoms dictate how I spend my time, I’ve had to accept and adapt to many…
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Lexeo Therapeutics has acquired the private, clinical-stage company Mantle Therapeutics, gaining the rights to several experimental therapies Mantle had been developing for Friedreich’s ataxia (FA) — including one already in early clinical testing. In announcing the deal, which could be worth more than $21 million, Lexeo also heralded…
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A few days ago, I celebrated my birthday. I love a party, so I love this occasion. It’s a reason to be with friends and family and eat cake. It is one of my happy places. My birthday is also a reminder of my journey with Friedreich’s ataxia (FA).
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At the beginning of September, I turned 39. As I enter the last year of my 30s, I feel both gratitude and resolve. Since I was diagnosed with Friedreich’s ataxia (FA) a few weeks before my 26th birthday, it is safe to say that the condition has been…
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I’ve been reading Wally Lamb’s latest novel, “The River Is Waiting,” and somewhere along the way I realized that this isn’t just another book I’m enjoying. It’s a reminder of why I keep coming back to Lamb’s work. That realization sent me back to the first time I picked up…
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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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