Every two years, I have to recertify myself as a licensed social worker. This process involves completing a significant number of continuing education units, commonly called CEUs. The one area of focus where I always struggle to find enough fresh, available training is ethics. Despite the lack of abundant coursework,…
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As I get further into my journey with Friedreich’s ataxia (FA), I realize how important smiling is. When I smile, it not only conveys to those around me that I am at least fine, if not better, but it also tells my brain the same. I get a lot…
Researchers have developed a new gene therapy for Friedreich’s ataxia (FA) that uses blood cells as delivery vehicles to transport a functional version of the frataxin protein to cells throughout the body, according to a study. In a new study, the scientists demonstrated that their therapy doesn’t disrupt the…
Friedreich’s ataxia (FA) places a substantial burden on both patients and caregivers, impacting physical, emotional, social, and financial aspects of their lives, a U.S. study found. Patients, who needed about 55 hours of caregiver support each week, reported a significant impact of the disease on their mobility, self-care, work…
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“Pain is inevitable, suffering is optional,” my husband, Dave, said to me. It’s one of his usual platitudes, and most of the time, I let it pass without much thought. But the last time he said it, I was mired in the mud of self-pity. I heard him and thought,…
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Living with Friedreich’s ataxia (FA) means I’ve learned to expect the unexpected. Sometimes when everything seems lined up just right, something completely out of my control will change the script. This week, that something was a spider bite. It started small, a mark on my arm I noticed when…
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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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