When I was diagnosed with Friedreich’s ataxia (FA) in 2013, my family and I had never heard of the disease. So we had a lot to learn about this new, lifelong character that was now a part of our story. My father, the kindest, wisest, and most generous and…
Discussion
A new documentary chronicling the story of two men with Friedreich’s ataxia (FA) as they undertake a seemingly impossible athletic endeavor — cycling across mountains, with a rare muscle disease — will premiere at a film festival in California later this month. The movie, “The Highest Road,” is…
Discussion
Lately, it seems like my journey with Friedreich’s ataxia (FA) has been a major focus of my life. Between sustaining three fractures in nine months, meeting new people, and refusing to let my symptoms dictate how I spend my time, I’ve had to accept and adapt to many…
Discussion
Lexeo Therapeutics has acquired the private, clinical-stage company Mantle Therapeutics, gaining the rights to several experimental therapies Mantle had been developing for Friedreich’s ataxia (FA) — including one already in early clinical testing. In announcing the deal, which could be worth more than $21 million, Lexeo also heralded…
Discussion
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).
Discussion
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…
Discussion
Discussion
Discussion
Discussion
Discussion
Discussion
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.
Get regular updates to your inbox.
