My high school emo self would feel deeply recognized in this column. I’ve always resonated with the eeriness of the 2001 film “Donnie Darko”; it’s a darkness that isn’t loud or theatrical, but rather solemn and quiet. It’s the kind that settles into your thoughts and asks questions without offering…
Researchers have developed a new type of gene therapy that, according to the findings of a new study in animal models, may correct both nerve and heart problems in people with Friedreich’s ataxia (FA). The one-time treatment, administered via a spinal tap, was designed to simultaneously target the heart…
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In December 2025, my husband, Kyle, and I traveled to the Children’s Hospital of Philadelphia to see neurologist David Lynch. It was the first time I had traveled for Friedreich’s ataxia (FA) care since transitioning to predominantly using a wheelchair. Therefore, much of the discussion centered on this transition.
Sensors worn while walking at a natural pace can accurately distinguish people with Friedreich’s ataxia (FA) from those without the disease, according to a study. Data from these sensors also showed that FA patients with greater step-to-step variability and irregular trunk movements during walking had more severe disease. “Digital…
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My mom died almost 10 years ago. Her birthday is tomorrow, Jan. 27, the same day that Holocaust Memorial Day is observed, and I always think of her on it. She passed on many strengths, including her loyalty to those she loved. She always spoke of my grandfather with reverence,…
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Friedreich’s ataxia (FA) is all-consuming. When I allow my experience with it to consume my thoughts, life with FA can seem like an insurmountable problem with no hope of rescue or normalcy. Living with FA and its symptom progression is entirely beyond my control. So what can…
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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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