Cover Story
At first glance, Riley Campbell may seem like any other recent high school graduate; she’s thinking about college, spending time with friends, and dreaming about the future. But beneath that typical image is a story steeped in resilience, faith, and a determination to make a difference.
Diagnosed with Friedreich’s Ataxia (FA) in late 2024, Riley has already turned her personal journey into a platform for advocacy. As a 2025 ambassador for the Friedreich’s Ataxia Research Alliance (FARA), she is using her voice to raise awareness, connect with others, and push for progress in a space that often goes unseen. Through it all, she remains grounded not only in her goals, but also in her identity as a teenager navigating life with courage and purpose. Her faith and family are integral in helping her do that.
Diagnosis & Making a Difference. Friedreich’s Ataxia is a rare, inherited, progressive neurodegenerative disorder that affects the nervous system, including the spinal cord, peripheral nerves, and cerebellum. It often appears in childhood or adolescence, bringing symptoms such as balance issues, fatigue, and difficulty with coordination. While there is currently no cure, treatments focus on managing symptoms and maintaining quality of life. For Riley, the diagnosis didn’t come overnight. “I was diagnosed with scoliosis in fifth grade,” she explained. “They thought surgery would help my walking. I had my first spinal fusion in sixth grade, and then later another one… But things just kept getting worse.” For years, Riley and her family searched for answers by visiting specialists, exploring possibilities, and trying to understand what was happening. It wasn’t until November of her junior year that the Campbell family finally received clarity and a diagnosis. Her mother, Minda Riley Campbell had seen the signs long before the diagnosis. “She could never figure out how to jog in a straight line or ride a bike,” Minda recalled. “Anything that required balance was a challenge. What we didn’t realize at the time was that the scoliosis was actually a side effect of FA.”
For many people a diagnosis like FA might lead to isolation and fear. For Riley, though, it became a turning point. “When I was diagnosed, I realized very quickly that there was almost no awareness about FA,” she said. “I knew I could either stay quiet and let fear take over, or use my story to help other people.” She became active as an advocate for the disease. Following in the footsteps of her grandfather, former Alabama Governor Bob Riley, she saw how those in government could make a difference. She chose to start sharing her experience with lawmakers in Washington, D.C., stressing the importance of research funding and support for rare diseases. “The whole experience was surreal,” she said. “At first, it was really intimidating walking into the Capitol. But they listened to my story, asked questions, and genuinely cared.” During her visit, Riley had the opportunity to meet with government leaders including U.S. Representatives Mike Rogers, Barry Moore, Dale Strong, and Robert Aderholt, as well as Senator Katie Britt. “Because it’s a rare disease, it doesn’t always get the attention or funding that more common conditions do,” explains mom Minda about how important Riley’s advocacy work is. “But government grants and research support are so important, not just for FA, but for all rare diseases.” “Funding is the big thing,” Riley said. “We’ve made progress, but we can always do more. My goal is to keep pushing for that.”
Moving Forward. Despite her advocacy work, Riley is still very much a teenager. She enjoys spending time with friends, going to the beach, working out, and singing. Her daily routine includes physical therapy and gym sessions—both essential for managing her symptoms. “When I wake up, I’m pretty unstable,” she said. “But going to the gym and doing physical therapy really helps.” After her diagnosis, Riley made the difficult decision to transition to online school to focus on her health. “It was a really hard time,” she said. “I had just transferred schools, and then a few months later, I got diagnosed. But going online has helped me focus on both my mental and physical health.” Even with those challenges, Riley has continued to excel academically. She recently earned a 4.0 GPA and was recognized as Student of the Month in a statewide program involving tens of thousands of students. “She’s been able to balance everything, including school, therapy, and volunteering,” Minda said. “It’s incredible to watch.”
Looking ahead, Riley is preparing for college. She will attend the University of Alabama where she hopes to study marketing and be involved in a sorority. “I’m really excited about finding friendships and independence,” she said. “I’ve even met another girl with FA who’s going there.” Making connections while fighting FA can be difficult, Riley added, but longtime friends have remained loyal and important. She has also made new friends with people who also have FA. “One of the first things I did was connect with other people,” Riley said. “Social media helped me find a community. That made a huge difference.”
Faith Focused. Throughout Riley’s journey, faith has been a constant source of strength. “Faith has been the foundation for everything,” she said. “There are days when I feel overwhelmed, but I believe that God gives me peace when I feel uncertain and strength when I feel weak.” Minda adds that faith has been an anchor for her entire family, including her husband Rob (an attorney for an international law firm) and son Bobby (who is 20 and attends the University of Alabama). “I would love to say I had a rock-solid faith right after the diagnosis,” Minda said. “But there were times when it was hard to pray. I didn’t even know what to pray for.” In those moments, she leaned on the support of others. “One of the greatest blessings has been our community,” she said. “When we couldn’t pray, we knew others were praying for us.” Minda often reflects on a comparison someone once shared with her about Riley. “A friend told me Riley reminds her of Esther,” she recalled. “A young woman given the opportunity to go before powerful people and advocate for her people. That’s exactly what Riley has done. Maybe she was made for ‘such a time as this’.”
When Riley speaks publicly about Friedreich’s Ataxia, her message extends beyond awareness. “Just be kind,” she said. “Not just to people with FA, but to anyone with a disability. You never know what someone is going through.” She also offers encouragement to those newly diagnosed. “It’s a crazy experience getting diagnosed,” she said. “But FA doesn’t define who you are. It doesn’t control your life or your relationships.”
For parents navigating a similar diagnosis, Minda offers similar honesty and hope. “Give yourself grace,” she stressed. “You’re not going to wake up every day feeling like you’ve got this. There are going to be hard mornings and nights.” She emphasized the importance of advocating for your child. “Doctors know medicine, but you know your child. Don’t be afraid to speak up, ask questions, and fight for what they need,” she said. She also encourages families to live fully in the present. “It’s easy to let fear take over,” she said. “But we’ve chosen to enjoy life—take the trips, make the memories, not worry about the small things.” Above all, she points back to Riley. “We’re supposed to be strong for her,” Minda said. “But honestly, she’s everyone’s inspiration. We gain strength from her.”
As Riley prepares for the next chapter—college, independence, and continued advocacy—her mission remains clear. “I’ll definitely keep going back to D.C.,” she said. “I want to stay focused on this and keep helping people.” Her journey is still unfolding, but one thing is certain: Riley Campbell is not defined by her diagnosis. Instead, she’s defined by how she’s chosen to respond to it with determination and faith.
-Cheryl Wray
Author, Freelance Writer, Speaker
Riley Campbell shares more about her journey with Friedreich’s Axatia, her hopes for the future, and more in the video interview below.
