Being One’s Own Hero

Part One: How Christian Maugee Raises Awareness and Advancement of Treatments for Friedreich’s Ataxia

by Mashari Grissom

More than just a Friedreich’s Ataxia patient, Christian Maugee exemplifies being your own hero. Using his voice towards meaningful change, Christian continues to spread awareness of Friedreich’s Ataxia (FA) while expressing the vitality of making patients feel human and valued in the clinical trial process.

A first-generation American descended from the Caribbean islands of Puerto Rico and Martinique, Christian as well as his twin sister, Isabel, were diagnosed with FA in 2008 at the age of nine. Since then, the Maugee family have been active in raising awareness and funds for research through their event, Runway to the Cure.

Today at the age of twenty-five, his courageous sister Isabel is wheelchair-bound, and Christian has begun to use his wheelchair more and more. Despite these challenges, they are strong, amazing, and determined young adults with the positive mindset to keep going.

What is Friedreich’s Ataxia?

Friedreich’s Ataxia is caused by mutations in the FXN gene, leading to reduced production of frataxin, a protein essential for mitochondrial function. The condition affects coordination, balance, and strength and can lead to severe complications such as cardiomyopathy and diabetes.

Becoming His Own Hero

After noticing the limited funding and small patient populations for clinical trials, Christian became an advocate and researcher for the rare disease. As a fifth-year PhD candidate, Christian studies in the lab as a student of the Genetics and Genomics program at the University of Florida. After participating in six clinical trials, his experience as a patient and researcher gives him a ‘dual lens’ focused perspective on the debilitating disease and its challenges in research and treatment development.

He shares his concerns on the rigid clinical trials and the importance of a positive patient experience:

“It is my opinion that clinical trial sites must become more patient-centric, allowing for flexibility in data collection when possible. Precision is vital, but so is ensuring that the data accurately reflects the natural variability of the patient population. Moreover, a positive patient experience can significantly impact the trial’s success…For example, in one trial, I was asked to delay using the restroom because a resting heart rate measurement was scheduled. While I understand the need for precision, such rigid practices can make patients feel undervalued.”

Christian believes that clinical trials should make patients feel respected and valued in order to increase patient participation which will reduce attrition and improve the reliability of the data collected.

After realizing the vitality of patient-centric care, Christian and his family are FA advocates raising awareness and funding through their event, Runway to the Cure.

About Runway to the Cure

On Saturday, February 1, 2025, starting at 6 p.m. to 10 p.m., the Runway to the Cure event will be held at Banyan Air’s airplane hangars of Ft. Lauderdale Executive Airport for a night of buffet meals, a silent auction, music, warm friendships, and shared hope.

Runway to the Cure benefits the Friedreich’s Ataxia Research Alliance in their mission to support research to find treatments and a cure for Friedreich’s Ataxia (FA).

As both a fundraiser and a researcher, Christian’s unique perspective allowed him to discover that clinical trials should foster patient-centric practices in order to improve participation rates, enhance data quality, and uphold the dignity of those who participate.

“Clinical trial sites must strive to balance the rigor of research with the humanity of patient care…As someone who has experienced both sides of the equation, I believe that treating patients as partners in research rather than subjects can help bridge the gap between science and the individuals it seeks to serve.”

Christian Maugee: More Than Just a Patient

The Harlem Times: How can one’s involvement in the Runway for the Cure make a difference?

Christian Maugee: Every ticket purchased, every donation made, and every voice raised at the Runway for the Cure is a direct investment in hope and progress. This isn’t just an event—it’s a movement. Your involvement helps fund groundbreaking research, supports families facing Friedreich’s Ataxia (FA), and amplifies the voices of those living with this disease. Together, we are creating a world where FA is no longer a life sentence. Be part of the difference. Be part of the cure.

THT: How has work-life been for you? Throughout your experience, are there a variety of jobs that have worked with your schedule? If so, what advice would you give employers based on your experiences?

CM: Work-life as someone living with FA has been a journey of adaptation and resilience. Flexibility has been the key—jobs that understand and accommodate my physical needs have allowed me to contribute meaningfully without compromising my health. For example, I currently work as a research assistant in my lab studying FA. My principal investigator, Christopher Vulpe, has been an incredible advocate for accessibility. He allows me to take time off for doctors’ appointments and clinical trials and has worked alongside me to make our lab ADA accessible by installing a reserved parking spot, push buttons for doors, and revamping the lab’s setup.

My advice to employers is simple: create an environment where employees can thrive by focusing on abilities, not limitations. Offer remote work options, flexible schedules, and accessible workspaces. These changes not only benefit employees with disabilities but also foster a culture of inclusivity that enriches the entire workplace.

THT: Christian, besides being an FA advocate, what genuinely makes you happy?

CM: What genuinely makes me happy is connecting with people and finding joy in the little things. I love going to the gym—it’s empowering to challenge myself physically. Cooking and meal prepping are also passions of mine; I enjoy creating meals that are healthy, hearty, and make me feel good. Video games are another great escape, offering both fun and a sense of accomplishment. Most importantly, I’m passionate about spending time with friends and family. They remind me that, despite the challenges, life is full of moments worth celebrating.

THT: Christian, we salute you for being your own hero! Your story is truly inspiring. What keeps you going? Share any small or big victories you are proud of.

CM: What keeps me going is knowing that my twin sister has faced all these challenges before me and yet remains a happy, smiling person. Her resilience inspires me every day. It also motivates me to know that sharing my story can inspire hope in others. FA has taught me to celebrate every victory, no matter how small—whether it’s completing a task that might be simple for others such as cleaning or cooking, presenting my research, or contributing to advocacy campaigns that raise awareness.

One of my proudest moments was passing my qualifying exam and reaching candidacy for my PhD in Genetics and Genomics. That milestone represented years of hard work and determination. Every step forward, no matter how small, is proof that we can make a difference.

How You Can Help

Your involvement can make a real difference. Whether through a donation, a sponsorship, or an auction item, your contribution fuels the critical research funded by the Friedreich’s Ataxia Research Alliance (FARA).

Visit cureFA.org/runwaytothecure to learn more, donate, or secure your tickets.