I like to consider myself someone who both thinks things through and can go with the flow, even though those two traits might seem to contradict each other. But maybe that’s what nearly 13 years with a disease like Friedreich’s ataxia (FA) will do to a person. Since my…
May is Friedreich’s Ataxia Awareness Month, and patients, families, and caregivers are coming together to support one another and encourage local communities to help meet the ongoing need for funding to cure this disease. Friedreich’s Ataxia Day is May 16. Leading the efforts is the Friedreich’s Ataxia Research Alliance…
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I recently watched a video that showed people dancing, hugging, and laughing together, their sense of community shining through. The video, which was shared on Friedreich’s Ataxia News‘ YouTube account from April’s Annual Ataxia Conference, filled me with both envy and pride. When I was diagnosed with…
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I’ve been mostly using a wheelchair for more than eight months, after relying on a walker or rollator for seven years, so I’ve done a fair amount of explaining to people what Friedreich’s ataxia (FA) is and what living with it is like. Explaining FA — what…
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Since writing my last column, I’ve been struggling to find hope after being denied participation in a gene therapy clinical trial. That may seem strange coming from me, since most of my writing over the years has been about the stubborn kind of hope that people living with…
Doctors’ early diagnosis of advanced heart failure in a man with Friedreich’s ataxia (FA) allowed for timely multidisciplinary evaluation that made heart transplant a viable and successful treatment option, according to a U.S. case report. More than two years after surgery, the man “continues to do well, living with his…
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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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