THE sister of a former footballer who died at 45 of Motor Neurone Disease has said it gives her some comfort to know that young players from his old club will be playing a part in finding a cure for the condition every time they run onto the pitch.
Blackburn United under-16s have dropped a business sponsorship from their strips for two seasons to honour former player Tam Agnew, who died at the age of 45 earlier this year after a 20-year battle with MND which claimed the lives of Celtic’s Jimmy ‘Jinky’ Johnson and more recently Rangers player Fernando Rickssen.
The young team’s jerseys will bear the logo of the University of Edinburgh’s Euan MacDonald Centre for MND Research, where the former footballer was assisting with the SMART trial, described as the biggest development in treatment hopes in a generation.
Rugby legend Doddie Weir is involved in the programme which is testing multiple drugs, rather than a single treatment at a time, and so aims to speed up the time it takes to find medicines that can slow, stop, or reverse the progression of the disease.
It will be announced on Monday that Glasgow is to become the third centre to recruit patients for the trial, following on from Edinburgh and Dundee, which will open up possible treatment breakthroughs to patients across NHS Greater Glasgow and Clyde.
Mr Agnew’s sister Sharon Wallace told how his three daughters, aged Charis, 15, Neve, 21 and Kaya, 25, made the decision to donate his brain and spine to researchers at the centre after his death in March to continue his support for the cause.
READ MORE: Doddie Weir to take part in 'ground-breaking' MND trial
She said: “Tam was 100 per cent behind anything which he hoped would help find a cure for this terrible disease. We know it is what he would have wanted.”
Motor neurone disease (MND), also known as amyotrophic lateral sclerosis or ALS, is a progressive condition that causes muscle to waste away.
It occurs when nerve cells called motor neurons, which send messages from the brain and spinal cord to the body’s muscles, which stop working properly.
More than 1,500 people are diagnosed with MND in the UK each year. There is no cure and half of people die within two years of diagnosis.
The player was diagnosed with the muscle wasting condition after suffering a football injury in his early 20s.
Mr Agnew had trials with Celtic - the team he ardently supported - Dundee United and West Ham as well as playing with a number of West Lothian clubs including Blackburn Utd.
“Tam was a decent player and loved a good, hard tackle,” said his sister with obvious pride.
“He was playing with east Fife and gave up as he was serving a plumbing apprenticeship with West Lothian council and was struggling with the travelling.
“He continued to play at an amateur level, even though he was having problems with his left ankle and eventually had to give up.
READ MORE: Book which documents Fernando Ricksen's battle with MND to be published
“He was diagnosed in his early 20s and had to medically retire from West Lothian Council, where he worked as a gas service engineer because it became too much for him.
“It was a very slow progressive illness. Tam’s motto was always, it is what it is. He was always positive, always cheery, given the cards he had been dealt.
“It’s a horrible, debilitating illness.”
“If he did have his down moment, he held them back from everyone. He was always upbeat.”
His condition deteriorated over Christmas last year before he was able to begin taking new medication that is being developed as part of the trial.
He died on March 14 and his funeral took place the day the Scotland went into lockdown on the 23 of the month, limiting numbers who were able to attend the service.
The family are also grieving for the loss of another relative from the same condition –
Mrs Wallace’s cousin died two months ago after developing MND, which was diagnosed shortly after her brother’s.
About 10% of MND is ‘familial’; that is, there is or has been more than one affected person in a family. The remaining 90% of people with MND are the only affected person in their family and are said to have ‘sporadic’ MND.
Mrs Wallace said publicity generated by higher profile sportsmen including Doddy Weir would be of huge benefit in the fight against the disease.
She said: “Tam was a huge Celtic fan and MND was always quite low key until Jimmy Johnstone and Fernando Ricksen were talked about.
“It’s much more high profile, which can only be a good thing. People know more about it because of these high profile sportsmen.”
READ MORE: MND breakthrough as scientists pinpoint cells behind motor neurone failure
Ms Agnew, who has volunteered with the team for 10 years, said the youth team’s agreement to deal had ‘come as a big surprise.’
She said: “I’ve been team secretary for ten years and I had decided to step down. The current secretary, Allan Harris, arranged it all as a surprise for me.
“As you can imagine it was quite emotional. Tam would have been absolutely over the moon. Football was the thing for him. He even got to the games before it became too much.
“It’s also good because the centre doesn’t get as much recognition as the bigger charities.
“Last April I did the Kiltwalk and my brother had asked that I do it to raise funds for the Euan MacDonald Centre and we raised more than £4000.
From tomorrow Glasgow’s Queen Elizabeth University Hospital will begin recruiting SMART trial participants from across the NHS Greater Glasgow and Clyde region, which cares for the largest number of people living with MND.
Dr George Gorrie, Consultant Neurologist and Lead for Motor Neurone Disease Greater Glasgow and Clyde, said: “The MND-SMART trial launching in Glasgow is some good news at a time when there isn’t much around.
“The pandemic and ensuring practices are COVID-19 compliant will impact how quickly people can be recruited to the trial but we are delighted to be able to start seeing participants.”
The trial was first announced in January and centres are due to open across the UK. Glasgow is the third such centre after Edinburgh and Dundee.
Those who have already registered online interest and who live in the region will be contacted by the Glasgow trial team over the coming months to discuss taking part.
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