Lately, I’ve noticed a word used very frequently in casual conversations. It can have multiple meanings, depending on the context, but in my case, as someone living with visible differences, it seems to imply a problem. In public, I’ll hear kids ask their parents, “What’s the matter with her legs?”…
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A new partnership aims to provide fast, consistent production of an experimental cell therapy for Friedreich’s ataxia. Papillon Therapeutics is teaming up with biological manufacturing company Cellares to automate the production of Papillon’s PPL-001, preparing the treatment for testing in clinical trials, and for commercial manufacturing…
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Recently, my sister Lisa asked me, “Why do you always write your column about sad things? You’re a happy person.” I had to think about that. I think part of the answer is that I write about Friedreich’s ataxia (FA), the biggest and most ever-present challenge in my life.
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Sometimes when I think my own little victory is simply about existing, I imagine myself answering questions that my 14-year-old self would’ve loved to have asked if he could see me now. I’m talking about the kid who was just beginning to understand Friedreich’s ataxia (FA) after reading about…
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The virtual care company Synapticure has launched a new program to offer remote neurological care for people with Friedreich’s ataxia and other types of ataxia. According to a press release from Synapticure, the new program can in some cases serve as a patient’s primary neurologist, or it…
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As I write this, noise fills my house: the nail gun, the power saw, and the construction workers’ radio. I can feel my hard-earned routine for living with Friedreich’s ataxia (FA) slipping out of reach. I keep reminding myself that each bang and disruption brings us closer to an…
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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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