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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I recently finished the book “The Midnight Train” by Matt Haig, and one line at the end stayed with me. The protagonist, speaking to a younger version of himself, urges him to make his wife happy. My immediate response was, “No, no, you can’t make other people happy.” My reaction…
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Every two years, I have to recertify myself as a licensed social worker. This process involves completing a significant number of continuing education units, commonly called CEUs. The one area of focus where I always struggle to find enough fresh, available training is ethics. Despite the lack of abundant coursework,…
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As I get further into my journey with Friedreich’s ataxia (FA), I realize how important smiling is. When I smile, it not only conveys to those around me that I am at least fine, if not better, but it also tells my brain the same. I get a lot…
Researchers have developed a new gene therapy for Friedreich’s ataxia (FA) that uses blood cells as delivery vehicles to transport a functional version of the frataxin protein to cells throughout the body, according to a study. In a new study, the scientists demonstrated that their therapy doesn’t disrupt the…
Friedreich’s ataxia (FA) places a substantial burden on both patients and caregivers, impacting physical, emotional, social, and financial aspects of their lives, a U.S. study found. Patients, who needed about 55 hours of caregiver support each week, reported a significant impact of the disease on their mobility, self-care, work…
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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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