I don’t think I will ever get used to having workmen in my house. The kitchen renovation continues, and the other morning, the workers gave me a story I think those of you in the Friedreich’s ataxia (FA) community can relate to. The carpenters told me they’d be at…
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A first-in-human trial testing Adjuvia Therapeutics‘ ATI-105 for Friedreich’s ataxia (FA) — an oral therapy derived from bacteria and engineered to cross a barrier protecting the brain — is now underway, having dosed its first participant. The Phase 1 study (NCT07869654), sponsored by the California-based biotech, is…
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This morning, I rolled into my office and found papers scattered across my desk. It looked as though a mischievous sprite had emptied the file cabinet. Unfortunately, I knew the sprite was me. Being organized makes life with Friedreich’s ataxia (FA) easier. When everything has an accessible home, I…
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I have a framed anonymous saying beside my bed that reads, “There are so many beautiful reasons to be happy.” I see it at least twice a day, and it makes me think about the things in my life I take for granted, dismiss as common, or that can be…
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Solid Biosciences‘ experimental gene therapy for Friedreich’s ataxia (FA), called SGT-212, has been granted orphan drug status in the European Union. This designation aims to offer additional incentives to companies investing in treatments for rare diseases, where the small number of patients can make it hard for drug…
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Last weekend, my mother, daughter, and I went to a glass-blowing studio to make decorative glass pumpkins. It was such a fun experience, and we learned so much about the 2,000-year-old art of glass blowing. I am now fully dependent on a wheelchair due to my Friedreich’s ataxia (FA)…
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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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