Professor Orla Hardiman of Trinity College, Dublin, IMNDA campaigner Charlie Bird and CEO of the IMNDA Lillian McGovern pictured in 2022.

Impact of ‘Climb with Charlie’ funds outlined at Athlone conference

Details of projects funded and services developed by the Irish Motor Neurone Disease Association (IMNDA), on foot of the Climb with Charlie fundraiser were outlined at a conference in Athlone earlier this month.

The IMNDA's 38th annual conference, in the Hodson Bay Hotel, on Friday, October 6, was opened by MEP Maria Walsh and featured a range of expert speakers including CEO of the IMNDA Lillian McGovern and Professor Orla Hardiman of Trinity College Dublin to discuss the latest services available and the latest research. There are now more than 450 people in Ireland living with Motor Neurone Disease.

The IMNDA reported a record year of fundraising for 2022 with more than €2.8m raised over the twelve months, up 11% on the previous year and with ‘Climb with Charlie’ accounting for a further €1.7 million. The impact of these funds was revealed at the conference in Athlone.

What started out as a personal undertaking by Charlie Bird and his wife Claire in early 2022 to climb Croagh Patrick in support of IMNDA and Pieta; became one of the most successful fundraising campaigns ever undertaken for IMNDA as hundreds of climbs and walks took place nationwide in a bid to ‘Climb with Charlie.’ This resulted in €1.7 million for IMNDA in 2022 and was aptly named the “Charlie Bird Development Fund.” It enabled the association to recruit an additional specialist MND nurse to support people living with MND in their own homes as well as improvements in practical supports.

CEO, IMNDA, Lillian McGovern, commented: “2022 was a great year for IMNDA and it led to a very busy 2023. What Charlie Bird and his wife Claire achieved was nothing short of remarkable and we’re happy to announce the completion of a number of projects in the last ten months as a result of the funds raised. We have expanded our nursing team so that people living with MND in any region in Ireland has a specialist nurse nearby; we supported (and continue to support) a European research programme looking at targeted therapies for those with MND; we introduced practical supports for transport, family breaks and respite care and we are about to launch a new voice banking service called ‘I will always be me,’ which is just an incredible use of technology.

The funds have also resulted in the completion of a number of improved services for people living with MND for 2023, including a soon to be launched new voice banking service designed by leading technology experts from Dell, Intel and Rolls Royce in collaboration with MND Association in the UK.

It is the first time this new voice banking method is being introduced in Ireland and will be available to access through the IMNDA free of charge for people living with motor neurone disease.

More than 450 people in Ireland currently live with Motor Neurone Disease and one person is diagnosed every three days with the condition.