This morning, I did something I rarely do: I asked my children for help with writer’s block. Every Monday morning, I sit down at my computer to write about whatever is in my heart or on my mind as it relates to living with Friedreich’s ataxia (FA).
The first patient has been dosed in a small study testing SGT-212, a gene therapy candidate being developed by Solid Biosciences for people with Friedreich’s ataxia (FA). The dose-finding Phase 1b FALCON trial (NCT07180355) — a first-in-human study being conducted at two sites in the U.S. —…
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It is spectacularly beautiful outside. A wintry mix early this morning has left a coat of ice on everything, which the sun is now illuminating, leaving me stunned by the beauty around me. It’s a snow day here in my part of New England. Of course, I hope it…
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As we drove down the street, the morning jam to music paused briefly when my eldest daughter said, “Don’t forget to go Dad’s way.” I smiled, knowing full well what she meant. Dad’s way was a shorter route to her school, but my daughter was also telling me, “Please pay…
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My husband, Kyle, who will turn 38 next month, has been involved in sports since the age of 5. He played baseball in college and learned numerous life lessons that have shaped him into the kind of husband, father, co-worker, coach, and volunteer he is today. To provide some background,…
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I have started fundraising for my next service dog so Wendy, my current service dog, can retire. It has not been easy, but I know it’s time. Wendy is always happy to help me, mainly by picking up things I drop, and she is always spot-on in public — except…
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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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