“Yeah, that was not me. It was you.” I finally said it out loud after all these years. I was not the first person to recognize that our daughter Amelia, then 4, was experiencing symptoms of Friedreich’s ataxia (FA); it was my husband. He noticed things that I, despite…
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Sometimes life with Friedreich’s ataxia (FA) can feel smooth, all things considered. Now and then, the accommodations my disabilities demand or the adaptations my symptom progression requires don’t seem that intrusive. I feel like I am, for the most part, able to take part in my life. My participation…
A committee of Canada’s Drug Agency (CDA) has recommended that insurers should cover the cost of Skyclarys (omaveloxolone) for Friedreich’s ataxia (FA), but only under certain conditions, including a substantial reduction in the drug’s cost. “The CDA recommendation represents an important step toward changing that reality by…
A few days ago, I looked at vacation pictures from our trip to Hawaii in 2007. It was a wonderful vacation — not perfect, but fun and relaxing. We watched postcard-perfect sunsets over the ocean, framed by palm trees, glowing in pinks and oranges. We relaxed on the beach, swam…
I’m 100% dependent on mobility aids due to my current stage of Friedreich’s ataxia (FA) progression. Given that, there’s never been a shortage of reactions by others to my various walkers and wheelchairs. In my personal experience, most toddler boys are fascinated by anything with wheels, so I’ve…
Genetic mutations causing Friedreich’s ataxia (FA) and influencing disease severity may be more complex than previously understood, according to research from the University of Oklahoma. Sanjay Bidichandani, PhD, genetics section chief at the university’s medical college, used a new genetic sequencing technique to find “spelling errors” in the FXN gene…
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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