Empowering Progress: Alex Fielding’s Journey with Friedreich’s Ataxia


Alex Fielding’s life took an unexpected turn when he was diagnosed with Friedreich’s Ataxia (FA) in his mid-twenties.  Despite the challenges posed by this rare, progressive disease, Alex has found ways to maintain his independence and make meaningful contributions to the FA community.

Returning to Rhode Island and finding solace in family support,

Alex channels his energy into his role as vice president of operations at his family’s manufacturing company.  His work not only provides a therapeutic outlet but also allows him to focus on something other than his disease.

Outside of work, Alex cherishes moments spent with loved ones, engaging in dinner parties, sailing trips, and riding his recumbent tricycle around town.  However, his dedication extends beyond personal pursuits as he volunteers extensively for Friedreich’s Ataxia Research Alliance (FARA) and advocates for increased research funding.

Through his involvement with Congressionally Directed Medical Research Programs (CDMRP) and the Peer Reviewed Medical Research Program (PRMRP), Alex actively participates in shaping research priorities for FA.  His commitment to amplifying the patient voice in scientific progress has led to significant strides in research funding and recognition of FA as a Topic Area.

Despite the absence of a cure for FA, Alex remains resilient,

Constantly adapting to new symptoms while driving progress in FA research.  His determination, drive, and passion serve as a beacon of hope for the FA community. Inspiring others to join the fight against this rare disease.

“No one chooses a disease, but everyone chooses how to react to that diagnosis,” Alex said. “Choose to fight, advocate, and advance scientific progress through networking and collaboration.”

Share your thoughts and/or comments and join our community today.  A place where we empower you to build a healthy lifestyle and raise overdue Ataxia Awareness.  Experience transformative storytelling and share your story to inspire positive change.

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