At 6:45am on Saturday, July 20, 2024, my eyes snapped open, and I immediately got out of bed. I had been looking forward to this day since April, and it had finally arrived. I hadn’t been to a FARA-hosted in over seven years, and I was eager to break that streak. A FARA-hosted Research Reception was being held at the Hyatt Hotel in Lisle, Illinois, about an hour and a half from where I live.
I went with both of my parents and my grandma, and we arrived about a half hour early to check in and socialize with the other attendees. Once the event started, I was absolutely thrilled to hear about what kind of research was going on in the FA world, about the current and recruiting clinical trials, and to hear from representatives of companies conducting research. Dr. Lynch gave a presentation on the neurological aspect of Friedreich’s Ataxia and further explained the potential benefits of omaveloxolone (Skyclarys), and Dr. Payne presented on the cardiac problems that many FAers experience.
After Dr. Lynch and Dr. Payne’s presentations and a short break, three panelists, two living with FA and a mother of children with FA, spoke about their experiences with FA and shared some tips for making daily life with a disability a bit easier. Even though I was diagnosed ten years ago at age nine, I was happy to hear everyone’s advice and about their experiences with FA.
After hearing all of the presentations and clinical trial updates from drug companies, we moved to my personal favorite part of the reception: the breakout rooms. There were different groups that we could go into based on what we wanted to hear about. I decided to join the group about independent living, and it was very informative. There were two people leading the group, but we all were chipping in with advice for each other. I just very much enjoyed getting to meet and connect with other FAers, and it was nice to be able to receive and give advice on a more personal level.
When I was diagnosed in 2014, there were no treatment options. Now, a decade later, there is one. When I was diagnosed, I was young and didn’t have a full understanding of FA and the rarity of it, but as I’ve gotten older, I’ve learned about the disease and understood how very uncommon it is to meet others who have it. This reception was a wonderful experience and reminded me of how far the FA community has come, and that we are never, ever alone.
– FARA Ambassador, Breanne Lessard