To kick off rideATAXIA Gainesville, an FA Forum was held on Friday, April 4 at the University of Florida’s Clinical and Translational Research Building (CTRB). Between 5:30 and 8:00 p.m., the third floor of the CTRB buzzed with conversation, connection, and curiosity. As you entered the building—home to many clinical trials—you checked in, grabbed some food and drinks, and were quickly greeted by a slew of familiar faces. UF doctors, research staff, and members of the FA community came together, including nine individuals with FA, making up part of the 50-person crowd.
The evening began with an overview of Dr. Barry Byrne and Dr. Manuela Corti’s research and UF’s broader contributions to FA science. This set the stage for six flash talks from FA community members—Dr. Subramony, Mackenzi Coker / Dr. Carmen Leon, Dr. Tanja Taivassalo, Dr. Lisa Romano, Christian Maugee, and Kayla Mandolini—each sharing work and results that were equal parts informative and inspiring.
Following the flash talks, a session on mental wellness headed by Kristen Lewandowski highlighted the importance of therapy and mindfulness, especially when living with FA. It touched on the need to seek out help and reflect inwardly, especially given the emotional weight of rare disease life. The forum closed with a talk on a seldom-discussed topic: Sexual Wellbeing in FA. Delivered with courage and care, Dr. Carly Autrey explored how adaptive equipment and open conversation can help remove stigma and foster connection. She kept the session light hearted, opening with a joke how pizza and sex are similar: Like pizza, good sex is really good, and even bad sex is pretty good. It was a bold, honest way to wrap the night—and it left many attendees with plenty to reflect on as they prepped for the next day’s ride.
- Written by Christian Maugee
On Saturday, April 5, 275 people gathered in the lovely – though scorching hot – Depot Park for the fourth annual rideATAXIA Gainesville, Florida.
As someone who has attended all four years, I always appreciate the liveliness this event brings year in and year out. Between racing down the roads on our bikes, battling on the fundraising leaderboards and then gunning for the much-coveted team spirit award, Gainesville always brings out plenty of friendly competition. In the end, the competition all brings us together in the fight against FA.
Of the 275 people in attendance, there were 12 fundraising teams, 20 people with FA and 30 volunteers all making it happen. All of us worked as a unit to raise over $61,000 dollars for FARA. Team “Chompin’ For A Cure” walked away with the team spirit award, and they should be proud of it because many teams really made a push for the award. It was really cool to see all the teams become their own brand by making their own shirts, hats and dressing in unison with each other. The energy truly makes rideATAXIA Gainesville special.
I think this positive environment was a great reminder of how strong we are as a unit even when everyday life blurs out hope. We still have the power to come together and fight for one another. After all, the FA community knows adversity all too well, and backing down isn’t our nature.
A lot has changed in the past year, but thank goodness rideATAXIA Gainesville brings a reliable energy. I think we all needed it.
- Written by Noah Griffith