The Irish Motor Neurone Disease Association (IMNDA ) hosted its 38th annual conference for people in Ireland living with Motor Neurone Disease and their families, in the Hodson Bay hotel in Athlone on Friday last.
The conference was opened by Midlands-North West 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, both of whom discussed the latest services and research available. There are now more than 450 people in Ireland living with Motor Neurone Disease.
The Irish Motor Neurone Disease Association (IMNDA ) has 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 IMNDA’s annual conference on 6th October held 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.
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.
Aptly named ‘I will always be me’, the new service being offered through SpeakUnique builds on previous voice banking technology as it features an e-book that describes what a diagnosis of MND might entail for someone. By reading the story aloud, the user can bank their voice in less than half an hour using a device such as a laptop – making it one of the easiest, user-friendly voice banking techniques out there.
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.
“The year 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.
“None of the work would have been possible without the generosity of the people across all the communities in Ireland who got behind Climb with Charlie but also all our other fundraising campaigns that our team work hard to drive every year. Our loyal MND community have been incredible at arranging local community initiatives and we are eternally grateful for the generosity and continued backing that we received from our donors to support our work nationally which allowed us to employ a further additional nurse for the South/Mid-Western region. The impact of being able to expand our team of nurses from four to six cannot be understated as it means our clients and their families can receive the care they need in a timely manner,” Lillian McGovern, CEO, IMNDA, commented.
