Money raised by Dublin priest increases hopes for breakthrough in treatment for motor neuron disease
Money raised for motor neuron disease by Fr Tony Coote, the Dublin priest who was diagnosed with the incurable neurological condition earlier this year, through his 550km fundraiser, has increased hopes for a breakthrough in the medical treatment of the condition.
Consultant neurologist, Professor Orla Hardiman of Trinity College Dublin told the Irish Independent she believes research into the disease, which progressively robs sufferers of their physical faculties, is on the cusp of a breakthrough in the next two to five years.
Fr Coote raised over €550,000 through his ‘Walk While You Can’ pilgrimage from Letterkenny to Ballydehob. Half of this money has been earmarked to fund healthcare services for the 400 sufferers of motor neuron disease (MND) in Ireland. There are currently only three dedicated nurses looking after them, and they are funded entirely by charitable donations.
The other half of the money will go towards a research project headed up by Professor Hardiman which will focus on testing brain wave and imaging patterns to better understand how the disease progresses and identify which drugs it responds best to.
“This money is vital. We are going to use the €250,000 to leverage further money to build a programme to understand brain activity and brain wave changes,” she explained. These clinical trials need to raise €8 million in Ireland and this will be part of a wider €40 million project across Europe.
“Motor Neuron disease is not an untreatable disease – it is an underfunded disease,” Professor Hardiman said and explained that there have been no significant advances in its treatment for 24 years due to a lack of research funding.
In Ireland about 150 new cases of MND are diagnosed every year. According to Professor Hardiman, this is not much lower than the number of people diagnosed with MS but MS sufferers “have good treatments now” and so can hope to live a much longer life than MND sufferers.
“There are about 350 and 400 people living with motor neuron disease in Ireland at the moment whereas there are 7,000 people living with MS in Ireland. So that shows the difference and the tragedy of motor neuron disease – it is a life shortening disease.”
She spoke to the Irish Independent following an advance screening of a new documentary 'Walking the Walk' on Fr Tony Coote’s epic walk which will air on RTE One on December 6 at 10.15pm.
The documentary follows Fr Tony Coote’s dogged and inspirational journey through Donegal, Sligo, Mayo, Galway, Clare, Limerick and Cork. Along the way, people join the walk, with communities the length of the country turning out to welcome and support him.
His inspirational campaign has increased awareness of MND according to Professor Hardiman who commented to the Irish Independent, “I am not religious – I lost my faith a long time ago, but this man is like a latter-day saint.”
Roger Childs, head of Religious Broadcasting at RTE told the Irish Independent that though the documentary is about a priest going on a walk, “it is actually about what it means to be a human being”.
He added, “What we have in Tony is a fantastically charismatic person who can articulate faith in really difficult circumstances.”