Champion of the rights of those with muscular dystrophy

Joe T Mooney, who has died aged 49, was chief executive of Muscular Dystrophy Ireland (MDI) and, as such, for 14 years provided distinguished leadership and support to members, families and colleagues.

Mooney had, before his appointment, been involved with the organisation for almost 20 years. Born in 1965, he had lived with the condition since childhood, and first became involved as a volunteer with the Donegal branch in the early 1980s.

He had never let his disability get in the way of his goals. While studying business in the 1980s, he and his late brother Seamus, who also had muscular dystrophy, designed and patented a disability transfer aid, “The Mooney Buggy”, in conjunction with the Institute of Industrial Research and Standards, now Enterprise Ireland. The concept was subsequently bought by a UK manufacturer for development.

Mushroom grower

After graduating, he ran a successful mushroom business in his home town of Carndonagh, Co Donegal, before moving to Dublin in the early 1990s.

As chief executive of MDI, Mooney focused a lot of his energies on developing unique services for the organisation. For over a decade he was the driving force behind the development of Ireland’s first National Resource Centre for Neuromuscular Conditions in Chapelizod in Dublin.

This facility, officially opened in April 2011, also incorporates a fully independent and wheelchair-accessible self-catering “home from home” apartment, offering short-term accommodation for people with disabilities.

Apart from his his work for MDI, Mooney had been actively involved over the years as a volunteer in setting up a number of organisations including Lucan Disability Action Group and West Dublin Disability Services.

He was chairman of both these organisations, as well as being a board member of the Centre for Independent Living and of the Disability Federation of Ireland.

He was the first manager of "Vantastic" – a wheelchair-accessible transport service established in 1994 before becoming manager in 1996 of the then newly formed Independent Living Community Services, a joint company involving both CIL and Rehab. There he remained as manager until 2001 before becoming chief executive of MDI.

Joe T Mooney was a colleague, a mentor, a peer, a gentleman and a true friend to many. He was a tireless disability rights campaigner who constantly challenged the status quo. He was also a truly exceptional individual with a unique and positive vision for change.

He is survived by his widow, Aisling, his mother, Mai, his sisters, Anna, Judy and Marie, his brother, Pascal, his relatives and many friends.