There’s a distinct stillness in waiting — a breath held between hope and reality. As I’m writing this, my May 13 appointment is approaching, and I find myself suspended in this limbo, where the future teeters between two possibilities.​ Living with Friedreich’s ataxia (FA), where progression often feels…
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Voyager Therapeutics expects to begin clinical testing of its experimental gene therapy for Friedreich’s ataxia (FA) in 2026. The company last year announced the selection of its FA gene therapy candidate, which is being developed in collaboration with Neurocrine Biosciences. At the time, Voyager had said…
I was transported to a joyful memory while listening to the radio a few days ago. I’m in the home where I grew up, and it’s sunny and cheerful. My sisters, Lisa and Tricia, and I are dancing around the living room, yelling first “I will get by, I will…
As the lecturer’s voice echoed in the large hall, I sat nestled between friends. This was a lifetime before my 12-year-old daughter Amelia’s diagnosis of Friedreich’s ataxia (FA), and before I was gearing up for a life of service, first as a volunteer and then as a social worker.
May is always a hectic month for my family. With school functions and class parties, youth sports, birthdays, Mother’s Day, and the approach of summer, life moves quickly this time of year. While part of me can hardly believe that the school year is already coming to a close for…
Children with Friedreich’s ataxia are often underweight and short for their age, while adult patients are frequently overweight, so regular nutrition checks are important for maintaining healthy weight, a study from Europe suggested. The study, “Longitudinal analysis of anthropometric measures over 5 years in patients with Friedreich ataxia in…
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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