Dinner in Support of Motor Neurone Disease Research and Clinical Trials
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Welcome! Research Motor Neurone (RMN) is an institute researching Motor Neurone Disease, also known as Amyotrophic Lateral Sclerosis. It is based in Trinity
College Dublin and is headed by Professor Orla Hardiman.
Read our 2018 Newsletter for an overview of key events and research involving RMN over the last 12 months. It can be found here
If you are interested in making a donation please click on the below link to donate directly and safely via credit card or to set up your own fundraising
For further information on how to donate click here.
Fr Tony Coote’s Walk While You Can Raises €520k
In November 2017 Fr Tony Coote, then 53, had a fall which he thought nothing of at the time, but
when it became a regular occurrence he went to the doctor and by spring 2018 he had a diagnosis of
Motor Neurone Disease.
Fr Tony is a former College Chaplain of UCD and of Ballymun Comprehensive School, now based in
the parishes of Mount Merrion and Kilmacud; a much-loved leader, he is well used to mobilising the
community for a good cause. Once he had overcome the shock of his diagnosis he decided to take
action to raise awareness of MND and funds for two key areas; as he explains: “One – there are only
three nurses in the whole of Ireland working with people with MND, 400 people in total, and two,
the medication that MND patients have is 24 years old, so unless there’s research, there will be no
hope for people in the future.”
Fr Tony came up with a grand-scale plan for a 550km “Walk While You Can” walk, winding from
Letterkenny, Co. Donegal to Ballydehob, Co. Cork, with the target of raising €250k to benefit the Irish
Motor Neurone Disease Association and research into the condition conducted by Trinity MND
research team. On 10 July 2018 Fr Tony and hundreds of supporters including Professor Hardiman
and her team, along with volunteers from the Irish Motor Neurone Disease Association (IMNDA) and
the SFI FutureNeuro Centre, set off on the first of 28 stages that would take four weeks to complete.
People from all over the country answered the call to join the walk and donations continued to flow
in after it ended in Ballydehob on 6 August, helping Fr Coote to raise over €500k (€1,000 for each km
of the walk), double his original target.
Tony Coote’s documentary, Walking The Walk, aired on RTE 1, 6th December 2018, at 10:45 pm. Follow the link below to read a preview by Professor Hardiman.
An overview of the majority of developments involving Research Motor Neurone by Professor Hardiman herself can be found in the article.
More information on what Motor Neurone’s Disease is as well as what the aims of our project can be found in the following slide deck, Reasons To Be Optimistic, to be presented at the ALS/MND Symposium in Glasgow December 05 2018
AN INTERNATIONAL COLLABORATION TO FIND
EFFECTIVE TREATMENTS FOR MOTOR NEURON DISEASE
More information can be found here:
The Andrew Lydon Scholarship in MND Research
On 21 September 2018 the Academic Unit of Neurology, Trinity College Dublin, held a ceremony to
mark the establishment of a PhD Scholarship in memory of Galway man Andrew Lydon.
The four-year scholarship will support a PhD Scholarship in Motor Neurone Disease Research, and
has been awarded to the Academic Unit of Neurology, TCD, by the Andrew Lydon Trust.
Andrew Lydon was a young Connemara-based computer programmer and father of two teenagers. He was diagnosed with motor neurone disease in 2010.. By 2015 he had developed breathing
problems that required invasive mechanical ventilation requiring a lot of support to allow him to live
at home. Andrew’s community in An Cheathru Rua, Galway, set up a trust fund to raise money to
make that happen.
Sadly, and after a long battle, Andrew passed away in December 2017 before it was possible for him
to get home.
Andrew’s family and community have now decided to establish a scholarship in his name to
commemorate his life and his long and courageous battle with MND. Mary Lynch McDonagh and the
members of the Andrew Lydon Trust, along with Andrew’s wife Sally and his children Seosamh and
Molly attended the ceremony in Trinity College on 21 Sept.
Dr Rangariroyashe Chipika, recipient of the scholarship, will pursue her PhD focusing on changes in
Brain Imaging and Signal Analysis in MND. Professor Peter Bede, who is supervising Dr Chipika’s
work, was one of Andrew’s doctors, along with Professor Orla Hardiman, Head of the Academic Unit
of Neurology. “Andrew was a truly special person,” said Professor Bede. “It is fitting that this
scholarship will focus on computational analysis of imaging signals. Andrew was a brilliant computer programmer, and I had many long discussions with him about computers, coding and technology as he participated in our brain imaging studies.”
Research Motor Neurone (RMN) was founded in 2007, for the purpose of promoting and facilitating research into the causes and treatments of motor neurone disease (MND), also known as ALS. RMN also strives to increase awareness of this incurable disease at both a national and international level.
Ongoing research is needed to discover the cause, treatment and methods of improving quality of life for MND sufferers and their families.
The generous support from our donors helps us make progress in finding ways to help those who suffer from this debilitating condition. It is through the fundraising endeavours of all our sponsors that essential funds are raised to support RMN and our ongoing vital research. Thank you all for your kindness and continued support.