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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My family, including my parents, recently took a grand vacation. We started in West Yellowstone in Montana, where we watched a juvenile black bear hunt a squirrel, swim across a river, dig for grubs in a downed tree, and relax in the sun. We also saw waterfalls, canyons, thermal pools,…
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Genetic mutations that cause Friedreich’s ataxia (FA) arise from a previously unrecognized category of FXN gene variants called a protomutation, according to a study. The protomutation was found exclusively in people of Eurasian descent and explains why the disease has always been limited to those populations. “These findings define…
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A couple of weekends ago, someone said something I hear all too often: “You are so lucky to be able to bring your dog with you.” I know they meant it kindly, but my first thought was, “Lucky?” Wendy is not just my dog. She is my service dog.
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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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