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Friday 1 December 2023 Dublin: 2°C
Friedreich's Ataxia

'I couldn’t just sit and wait for a cure': How this man is raising funds to research his rare condition

Symptoms of Friedreich’s ataxia include loss of coordination, vision impairment and hearing loss.

BARRY RICE WAS diagnosed with Friedreich’s ataxia (FA) just over three years ago.

His balance and coordination had been deteriorating for years, but doctors couldn’t figure out why.

He finally found out what was wrong in January 2013.

Barry (35) inherited FA from his parents, who are both carriers of the defective gene that causes the condition. They do not have the condition themselves.

Barry recalled how his first daughter was just three months old when he got the diagnosis, telling us: “I was worried sick she would inherit it.”

His wife Claire was tested for the gene. There was about a one in 80 chance she would be a carrier, but thankfully got the all-clear. If Claire was a carrier, their children would have a 50/50 chance of developing the condition.

The couple have two daughters, Ellen (3) and Isabelle (1).

Barry, who is from Dublin, said there is an “extremely small chance his daughters will” inherit the condition but both are “doing great”.

“Only when one carrier procreates with another carrier, children are at risk,” he added.

family c / o Barry Rice Barry and his family c / o Barry Rice / o Barry Rice

Barry said his mobility “is continuing to go south” but he is still able to drive. He uses a wheelchair when he’s not at home.

He works from home with his family’s interior design company.

Barry told us his diagnosis was a shock, especially when he heard there was no cure.

What is Friedrich’s Ataxia?

Friedreich’s ataxia (FA) is a debilitating, life-shortening, degenerative neuromuscular disorder. It causes progressive loss of coordination and muscle strength, leading to full-time use of a wheelchair.

Most young people diagnosed with FA require mobility aids such as a cane, walker, or wheelchair by their teens or early 20s. Onset of symptoms can vary from childhood to adulthood. Childhood onset of FA usually occurs between 5 and 15 years and tends to have a more rapid progression.

Cycle Ataxia / YouTube

Symptoms include loss of coordination, fatigue, vision impairment, hearing loss, slurred speech, and scoliosis (curvature of the spine). Associated conditions include diabetes and hypertrophic cardiomyopathy (a life-threatening heart condition).

About 150-200 people have been diagnosed with FA in Ireland. More information about the different forms of ataxia can be read here.

Cycle Ataxia

Barry has late-onset FA. Following his diagnosis, he wanted to exercise to reduce his risk of developing heart problems. After doing some online research, he was able to get a recumbent tricycle, which allowed him to cycle outdoors.

BARRY RICE  HEALTH AND LIVING  PIC MARTIN MAHER c / o Barry Rice c / o Barry Rice / o Barry Rice

Barry set up Cycle Ataxia to raise funds for vital research in the area.

I couldn’t just sit on my hands and wait for a treatment to happen. What I’m doing is small potatoes on the grand scale of things, but I didn’t want to just sit around and wait.

The inaugural race was in 2014, with about 275 people taking part. Last year, more than 500 people took part. About €15,000 and €18,000 was raised in 2014 and 2015 respectively.

Barry is hoping 800 people will take part in the event next month, raising about €20,000. This year’s cycle will take place in Ashbourne, Co Meath on Saturday, 18 June. The event has a number of different routes, varying from 13km to 110km.

niall and mick kearney original crop (Large) c / o Barry Rice Barry's cousins Mick Kearney, Leinster rugby player, and Niall Kearney, a semi-professional golfer. c / o Barry Rice / o Barry Rice

Barry’s cousins Mick Kearney, Leinster rugby player, and Niall Kearney, a semi-professional golfer, are due to take part.

Barry took part in the event last year, but said he’ll focus on helping run the event this time around.

The money goes towards the Friedreich’s Ataxia Research Alliance, as well as to buy adapted bikes and tricycles for other people with the condition in Ireland.

Registration for the race is still open. More information can be found here.

Read: This man is about to set sail around Ireland … in a dinghy

Read: Record numbers choosing cycling or public transport in Dublin city

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