For nearly seven years now, my clinical trial site at the University of Florida has been my second home. My mom, dad and grandparents have all accompanied me on multiple 5-hour drives down to the Swamp in Gainesville, Florida for the various studies and trials I’ve participated in since July 2018.

When my mom first told me about the opportunity to join a clinical trial, it was more of a shrug – “I mean, sure. It sounds like a good thing to do.” Still, that unenthusiastic decision has changed my life for the better in more ways than I could’ve imagined.

I have since taken part in five studies/trials; three of the trials are completed and the two studies are ongoing. That first trial I joined in 2018 turned out to be FA’s first approved treatment on Rare Disease Day 2023, and another I completed in 2023 – Track FA – provided monumental information to the FDA that led to the approval. The other trial I just finished at the beginning of the month was an exercise trial that I participated in for about a year that tested a stationary bike called the Myocycle and the effectiveness of electrical stimulation on FA patients. I also participate in the Natural History study and Biomarkers, which basically measure disease progression among the general FA population over time.

Participating in these trials means a lot to me. First off, the opportunity to participate in something bigger than myself and help advance FA research is such a blessing in my life. To be able to contribute towards finding treatments and/or a cure for this cruel disease is something I don’t take lightly. It’s why I always give as much as I can in these studies, even if I don’t fully understand why or what it’s for – if I can help serve this community, sign me up! It’s something I CAN do about this uncontrollable disease and a way I CAN show up and contribute.

Although I help others through advancing research, participating in trials has given back to me just as much. It’s how I met other people with FA for the first time, and I couldn’t have asked for better individuals to come in contact with. Kaity Ratcliff, Shandra Trantham, Kyle Waterman and others showed me that I had a lot of life in front of me, and a lot of good left if I chose to fight for it. They also got me in touch with others with FA through inviting me to a group chat, which led to me making incredible friends, attending FARA events and then becoming a FARA ambassador.

Joining a clinical trial so soon after diagnosis sped up my process of acceptance of life with FA and spurred a ton of personal growth, as it does to this day.

My visits at the beginning of the first trial I was in were every six weeks, the most frequent period of appointments I’ve ever had. Needless to say, I missed some school throughout my senior year of high school (shoutout to my teachers at Glenwood for helping me keep up with my schoolwork). It was a good getaway for me and good quality time with my mom/dad, but it was also tiring at times. My appointments are typically about 8 a.m. to 3 p.m. and consist of functional assessments (like the FARS exam in the top photo), the 9-hole peg test (in the below photo), walking tests, MRIs, bloodwork and vitals, many questionnaires, vision and speech tests, an exercise test on a stationary bike, pulmonary function testing, an echocardiogram (heart imaging), and more. I usually have two days of appointments per visit, so we stay the nights before each appointment and drive back after my second one.

As well as measuring my physical symptoms, these trials have also helped me measure my emotional growth. First I want to say my trial coordinators and doctors have always treated me like a friend and not just a research subject, which has been incredibly healing. When I first started going to Florida though, I was super shy and uncomfortable in my own skin, so I didn’t open up or take full advantage of the relationships available to me. Over the years, however, I have seen myself open up, become more confident and more vulnerable with the people running my trial. That self-growth has paid huge dividends for me outside of my trial as well as I’ve graduated high school, gone through college, graduated college and navigated the challenges and joys of post-grad life. Clinical trials have been a staple in my life through it all.

The University of Florida is the gold standard for clinical trial sites, and those people involved in the trials are the reason why I consider Gainesville my second home. That being said, I know how big of a blessing that is because I’ve heard many stories from other people with FA – horror stories, shall I say – about clinical trial experiences that were much of the opposite. I just got lucky that UF is the closest trial site to me, but that also has given me plenty of reason to stay active in trials there and not experiment elsewhere. And I’m sure more clinical trials at the Swamp are in my future.

Clinical trials have impacted my life in many ways, but I’d be remiss to not give credit to the people who have made it possible. I wouldn’t be able to make my trial visits without the selfless care of my mom, dad, and my Grammy and Pawpaw. Those are the behind-the-scenes heroes that don’t get enough thank you’s for it all. I’m so thankful for their presence with me on these visits and all the memories we’ve made because of it. I’ll always cherish me and mom’s Starbucks runs, stops at Cracker Barrel, and shopping trips. And I’ll always remember me and dad’s late-night outings to grab a milkshake, our Bass Pro visits and the laughs we shared while hanging out with Kyle Waterman. Then for my last few visits, my grandparents have graciously stepped in to bring me – I am grateful for our steak dinners, the opportunity to go to my first Florida football game with my grandfather, and for the endless care and support they give me. Here is my thank you for all you do.

I don’t know what my life would look like if I hadn’t nonchalantly agreed to join my first clinical trial at age 17, but I sure wouldn’t want to find out. Joining a clinical trial has brought some of the biggest blessings into my life and helped completely flip my outlook on life with FA. It is the very place that has taught me the meaning of my favorite phrase – keep fighting.

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Participating in clinical trials means a lot to me. The opportunity to participate in something bigger than myself and help advance FA research is such a blessing in my life… It’s something I CAN do about this uncontrollable disease and a way I CAN show up and contribute.

If you have FA, I encourage you to join the patient registry to learn about enrolling clinical trials here: https://www.curefa.org/research/participate-in-research/

If you don’t live with a rare disease but want to help fund research, donate to FARA here: https://www.curefa.org/donate/

If you are unfamiliar with clinical trials and want to learn how they work, read more here: https://www.csl.com/we-are-csl/vita-original-stories/2023/infographic-what-is-a-clinical-trial