New MND nurse will help assist those in Meath living with the condition - thanks to Charlie!

New MND Nurse & MND Research Trials now possible thanks to Charlie

The IMNDA is delighted to announce that it has started the recruitment process to hire an additional Clinical Nurse Specialist - all thanks to monies raised by Charlie Bird and his phenomenal fundraiser, Climb with Charlie, which saw over €1.7 million raised for those living with Motor Neurone Disease (MND). This is the first of many projects that the IMNDA are delighted to unveil.

Thanks to Charlie and Claire Bird, and everyone who climbed and donated towards Climb with Charlie back in April, the IMNDA established the “Charlie Bird Development Fund”. This incredible fund was created after a national consultation process with our MND community. The overarching objective of the fund is to provide the necessary supports to help those with MND live as independent a life as possible in their own home and within their own community.

The outreach nursing service provided by IMNDA currently consists of five regional nurses, who help over 410 people with MND living across 26 counties. The new nurse position will cover the counties of Louth, Meath, Offaly, Westmeath, Longford and Kildare. This dedicated MND nurse will look after approx. 75 people living within the Midlands. Having access to an MND Nurse can sometimes be the difference between coping and not coping at all.

“We are so pleased to announce, thanks to the Charlie Bird Development fund, that we have already started to recruit a new nurse specialist. For so long, our nursing team has struggled with large caseloads as well as having to travel long distances to support our clients. Thanks to Charlie and Claire, we now have the opportunity to provide a Clinical Nurse Specialist in every region and ensure that our clients receive the highest standard of support they need in their own home. We are also delighted to contribute funding towards a clinical research project into improved treatments for MND and overseen by Professor Orla Hardiman of Trinity College, Dublin.

These are the first of the initiatives that we can now offer, because of Charlie and we are so grateful to him for his great efforts in helping families living with MND” said Lillian McGovern, CEO, IMNDA.

“We are delighted to work with IMNDA and Charlie Bird to support our ongoing research into the causes and impact of MND in Ireland, and in progressing the development of new and more effective treatments. We have made great research progress in Ireland over the years, and we will continue to work towards a future world where MND becomes a treatable condition”, said Professor Orla Hardiman.

“I am delighted to see monies raised through Climb with Charlie going to great use for those families living with MND. Monies invested in an additional nurse will provide great support to families while an investment in research will help on the road to finding a cure.” Charlie Bird.

The Charlie Bird Development Fund will also provide:

- Funding for those living with MND who wish to avail of a voice banking service

- A respite ‘recharge’ grant for a hotel stay away from home for families in taking a well-deserved break in a comfortable and convenient location.

- A transport grant to enable clients make their MND clinic appointments in comfort

- A care giver respite grant to alleviate the burden of care felt by many

None of these projects would have been possible if it weren’t for Charlie Bird and his incredible bravery. Not only will the IMNDA be able to fund these initiatives in the short-term, but the Charlie Bird Development Fund will enable us to ensure these essential services will be ring fenced for the next 5 years.

Motor Neurone Disease (MND) is a progressive neurological condition that attacks the motor neurones, or nerves, in the brain and spinal cord. This means messages gradually stop reaching muscles, which leads to weakness and wasting. MND can affect how you walk, talk, eat, drink and breathe. However, not all symptoms necessarily happen to everyone, and it is unlikely they will all develop at the same time, or in any specific order.

The Irish Motor Neurone Disease Association (IMNDA) is the only organisation of its kind in this country. It was set up in May 1985 to provide care and support to people with Motor Neurone Disease, their care givers, families and friends. There are currently over 400 people living with MND in Ireland. MND is often referred to as the 1,000 day disease as most people die within 1,000 days of being diagnosed. 1 person dies every 3 days from MND.