GAINESVILLE, Fla. – A 26-year-old PhD candidate from the University of Florida, Christian Maugee, is teaming up with Bill Nye the Science Guy to raise awareness for Friedreich’s Ataxia (FA), a rare genetic neuromuscular disease.
Maugee was diagnosed with FA when he was just nine. His twin sister, Isabel, showed early signs at eight, prompting their family to undergo genetic testing. By age 14, Christian faced slurred speech and balance issues, which eventually led him to use a walker and then a wheelchair.
“Being diagnosed feels like your world is ending,” Maugee said. “It’s crucial for those affected to realize they aren’t alone and that research is ongoing.”
Now, he’s working with Bill Nye, Biogen, and the National Ataxia Foundation to spread awareness about FA. Maugee hopes to help others understand the disease while encouraging more research in the field.
He appears in three out of four episodes of “The Science Guy: Back in the Lab for FA.” Maugee said, “It was amazing to see myself in a lab setting with Bill Nye. It felt like a dream come true.”
Currently, there is no cure for FA, but Maugee is determined to change that. “The more people know about this disease, the more research can be done. I believe this can lead us closer to a cure,” he added.
Recent studies indicate that rare diseases like Friedreich’s Ataxia often receive limited funding and awareness compared to more common ailments. According to a survey by the National Institutes of Health, only a small percentage of funding goes toward the research of rare diseases, even though these affect millions. This makes initiatives like Maugee’s partnership with Nye all the more crucial.
You can check out the episodes of “The Science Guy: Back in the Lab for FA” here.
