She was diagnosed three years ago and her symptoms are likely to worsen over time, eventually leading to her dependence on a wheelchair.
Left to right: Larry Sheeran, Kate Murphy, Trish Murphy, Clare Sheeran, Sheila Sheeran, Nuala Watkins and Paul Sheeran
A sold-out charity gala organised in support of a Belfast woman has raised more than £28,000 for research into a rare progressive genetic disease.
Clare Sheeran from the south of the city lives with Friedreich’s Ataxia (FA), a progressive neurological condition that leads to a decline in motor skills. It causes damage to the nervous system and affects movement, speech and the heart.
Clare was diagnosed three years ago and her symptoms are likely to worsen over time, eventually leading to her dependence on a wheelchair.
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The 47-year-old previously told Belfast Live how the diagnosis meant she had to renegotiate her closest friendships and how she is learning to navigate her social life despite her health challenges.
During an emotional evening at the Stormont Hotel recently, sponsors, schoolfriends, family and the wider FA community from across the island of Ireland came together to support research aimed at finding a treatment for the condition.
The FARA Ireland Spring Charity Gala Ball was organised by Clare’s schoolfriends, with support from local and international businesses, including headline sponsor Lexeo Therapeutics, which is developing an investigational gene therapy aimed at addressing the underlying cause of Friedreich’s Ataxia-related heart disease.
The event was also supported by Todd Architects, MediCare Pharmacy Group, Make Kitchens, Nanny Payroll, Merlin Car Auctions, Celuplast Ltd, The Errigle Inn, New Hampshire Interiors and Johnson Controls.
Clare delivered the opening address and was cheered on by more than 240 guests, including over 80 friends from her former school, Rathmore Grammar School. The event also helped connect Clare with other families affected by FA, many of whom attended on the night.
She said: “When I was diagnosed, one of my biggest fears was that my world would get smaller and that the friendships I had built my life around would change. Saturday night showed me the exact opposite. To look around that room and see my family, my schoolfriends, sponsors and the wider FA community standing with me was overwhelming. Knowing that together we raised more than £28,000 for research gives me real hope.”
Guests were also moved by a speech from 20-year-old Kate Murphy from Belfast, who spoke about living with Friedreich’s Ataxia, a condition also affecting her brother Jack. Kate, who uses a rollator, spoke powerfully about refusing to be defined by the condition.
Almost half of that total was generated through a live charity raffle featuring prizes including a London theatre break, an original painting by local artist Paul Walls, and a money-can’t-buy experience to watch the Northern Ireland squad train at the Clearer Twist National Stadium at Windsor Park.
Noel McGrath, Chairman of FARA Ireland, was overwhelmed by the amount raised: “This money will support vital research into Friedreich’s Ataxia and help maintain momentum towards finding a treatment for people living with the condition. As a father of a young girl with Friedreich’s Ataxia, I want to say a huge thank you to everyone who attended, sponsored, donated prizes, bought raffle tickets and helped turn a personal story into a powerful show of community action.”
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