A few days ago, I celebrated my birthday. I love a party, so I love this occasion. It’s a reason to be with friends and family and eat cake. It is one of my happy places. My birthday is also a reminder of my journey with Friedreich’s ataxia (FA).
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At the beginning of September, I turned 39. As I enter the last year of my 30s, I feel both gratitude and resolve. Since I was diagnosed with Friedreich’s ataxia (FA) a few weeks before my 26th birthday, it is safe to say that the condition has been…
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I’ve been reading Wally Lamb’s latest novel, “The River Is Waiting,” and somewhere along the way I realized that this isn’t just another book I’m enjoying. It’s a reminder of why I keep coming back to Lamb’s work. That realization sent me back to the first time I picked up…
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International Ataxia Awareness Day on Sept. 25 aims to bring people together worldwide to raise awareness of ataxia — a group of diseases that includes Friedreich’s ataxia (FA) — and the National Ataxia Foundation (NAF) is urging everyone to take part through advocacy, social media, virtual and in-person…
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About a week ago, I sat in my husband Dave’s car with butterflies in my stomach. My new service dog, Fresco, sat calmly in the back seat. Fresco and I were about to take the public access test for service dogs. I didn’t want to do it. After only…
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One good thing that came out of fracturing my leg this summer is that I’ve resumed physical therapy. I went to physical therapy once or twice a week from 2017 to 2023. We would work on everything. If I had an injury or problematic pain, we would work on…
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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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