Ireland’s two dedicated Motor Neurone Disease support organisations have been presented with E78,000 thanks to the fundraising efforts of people in the Cashel area.
Last Friday the MND fundraising committee handed over two cheques to groups who provide essential service, care and support to MND patients all over Ireland and who also carry out research into the disease.
Professor Orla Hardiman accepted €40,000 on behalf of The Motor Neurone Research Foundation IMNRF and Marie Reeve excepted €38,000 on behalf of The Irish Motor Neurone Disease Association IMNDA.
MND is a very rare but incredibly debilitating illness with about 250 people in Ireland suffering from the disease at any one time. This disease which affects speaking, swallowing, walking, breathing and all general movement in the body will eventually lead to patients becoming completely paralysed and requiring 24 hour care. MND needs a vast amount of medical and therapeutic services, including neurologists, respiratory physicians, palliative care, G.P services, physiotherapy, speech therapy, occupational therapy, nutritionist, Hospice home care, home care assistants, public health nursing and Central Remedial Clinic services.
The IMNDA provides specialised nursing advice, support and vital equipment to MND families all over Ireland. The Research Foundation focuses on providing a specialist clinic to patients with MND and helps continuity of care by liaising with the primary care doctors and community-based services. The internationally recognised research group, headed by Professor Orla Hardiman, is in collaboration with many of the major MND centers in Europe and the USA. This Research Group holds a complete database of all patients diagnosed with MND in Ireland since 1994, and a bank of over 1200 DNA samples. The Irish MND Register is the longest running register of its kind in the world. The US has been encouraged to follow Ireland’s lead and has now also set up its own MND database. Only recently this research group identified an important new susceptibility gene for MND which occurs with higher frequency in populations of Celtic extraction and also a drug that is having a strong positive effect in MND mice.
The current gold standard of treatment, riluzole, is associated with only a three to six month increase in survival. There is an urgent need for new treatments and research in Ireland is helping to provide a better understanding of the disease.
The main fundraising event was a golf classic held in Dundrum House Hotel in August. This six-day golf classic had 220 teams and was accompanied by a Benefit Dance night attended by 600 people and a traditional night of music for the golf prize giving. These three events raised €70,000. E8,000 was kindly donated by the Dualla Ploughing Association.
The event was the idea of three local families, who have family members suffering from MND. The McCormack, O’Connor, and Reade families formed a fundraising committee of family and friends. The families are hugely appreciative of the support and care provided to them and other sufferers by the IMNDA and IMNRF. Never did they expect to see such overwhelming support and the figure of €78,000 shows just how generous people are even in these challenging times.
In attendance, on Friday, was Marian O’Connor, who has been battling MND for the past three years. Despite needing 24-hour breathing ventilation support and despite her only movement confined to her eyes, she made a big effort to attend the presentation. Being there, on behalf of all MND patients, and in particular Karen Reade, was important to Marian as she wanted to express her heartfelt gratitude to everyone for all their hard work. Dr. Hardiman couldn’t believe that Marian was able to make it and said she was ‘truly touched and genuinely moved by her trip to Tipp’. Marian also wishes that we remember her brother Seamus McCormack who recently died from MND.
The Reade, O’Connor and McCormack families would like to thank everyone in Tipperary and nearby counties for their incredible support for this worthy cause and would also like to extend a special thanks to the hard working committee members without whom none of this would be possible. A note of thanks also to Deputy Tom Hayes for his support of this fundraiser and for taking an interest in those with MND.
The committee and families would also like to express their sincere condolences to the Kinane family on the recent death of their sister Margaret who passed away from MND. The Kinane family on hearing of the fundraising actives based in Cashel last August immediately offered their help and raised significant moneys in their home area of Rossmore.
Further information can be found on website www.mndtipperary.com .You can still make a donation to the Cashel Credit Union: Name: 13173 Motor Neurone Tipperary Fund Sort Code: 90597 A/C No. 15582568.