My name is Barry Rice, and in January 2013 I was diagnosed with Friedreich’s Ataxia. I had been suffering from ataxia for years. My balance and coordination had been deteriorating and my doctors couldn’t explain it. When I began to have difficulty with my speech I was tested for Friedreich’s Ataxia (FA).
When I received my diagnosis I began to research FA. I learned about the disease and what the future would hold for me. I read about the research that was being undertaken in the hope of finding a cure or a treatment. During my research I discovered a fellow FA sufferer by the name of Kyle Bryant. Kyle had created a charity cycle event in the USA called ‘Ride Ataxia’, and was using the funds raised to support the ‘Friedreich’s Ataxia Research Alliance’ (FARA), who were focussed on developing a cure or treatment for FA.
Although I am unlucky enough to have this rare degenerative condition, I count myself lucky among sufferers of FA. At the age of 34 I am still high functioning. I use a wheelchair or walking aid from time to time, but I can still walk short distances unaided. In the majority of FA cases, sufferers are fully dependent on wheelchairs by the time they reach their 20’s, and in some cases this happens when they are as young as 6 or 7. Complications such as diabetes and heart disorders reduce life expectancy drastically.
Inspired by the efforts of Kyle Bryant, I have decided to use the abilities I still retain to raise awareness of FA, and funds for clinical research & patient care. Although ‘Cycle Ataxia’ has been a personal project of mine, I could not have put it together without the support of Dermot Rice (Priority Management) & Martin Mannering and The Ratoath Wheelers.