Irish Motor Neurone Disease Association receives €500,000 funding from JP McManus Foundation

The large donation by the foundation named after the billionaire Limerick native was the second major funding boost for the IMNDA in 2022 and followed the €1.72m generated by the late Charlie Bird's ClimbwithCharlie campaign.

Asked if the association received any similar large donations in 2023, a spokeswoman for the IMNDA said on Monday that the association “didn’t receive any such large scale donations in 2023, unfortunately”.

“All of our fundraising [in 2023] came from in-house campaigns, community fundraising and donations from individuals and a small number of corporate clients.”

The IMNDA’s 2022 annual report discloses the €500,000 from the JP McManus Foundation in 2022.

The JP McManus Foundation has donated tens of millions of euros to various charities and initiatives around the country.

The 2022 annual report shows that the JP McManus Foundation donated the €500,000 to support the provision of an additional Motor Neurone nurse and associated costs for the Limerick, Tipperary, Cork and Kerry areas.

The funding for the role commenced on October 28, 2022, and is to be spent over the next five years.

Commenting on the JP McManus Foundation in the IMNDA’s annual report, Ceo, Lillian McGovern stated that during 2022, “we also received the news that we were the beneficiary of a hugely significant donation from the generous J P McManus Foundation to support our work nationally”.

“Recognising the importance of home support for those with Motor Neurone Disease (MND), we were provided with the funds to employ an additional nurse to provide this valuable support to those in the South/Mid-Western region.

“For many years, our small team of nurses, which started off with just one nurse, struggled to meet clients in their homes as they covered huge territories and long distances. This expansion of the team has eliminated this and ensured that our clients and their families receive the care they need and in a timely manner.”

Ms McGovern stated that the €1.7m from the Climb with Charlie funding is to be “ring-fenced for direct support to those affected by MND and was aptly named the “Charlie Bird Development Fund”.

As a result of consulting with members, seven programmes or initiatives have been created under this fund.

The monies will fund the below programmes - Clinical Nurse Specialist (CNM2) for the Midlands region; the development of a voice banking service grant; the development of a transport support service through MND centres; the development of a respite “recharge” service; the development of a carer support programme; the establishment of a dedicated fund for longer-term respite care and the support for three-year EU Research programme into MND treatments

Motor Neurone Disease (MND) is a progressive neurological condition that attacks the motor neurones, or nerves, in the brain and spinal cord which means messages gradually stop reaching muscles, which leads to weakness and wasting.

There are over 400 people living with MND in Ireland and the report states that MDN is often referred to as the 1,000 day disease as most people die within 1,000 days of symptom onset.