I've just received an email today announcing the sudden death of Tom Isaacs on 31th May.
Many in the UK will know Tom as the founder of the Cure Parkinson's Trust of which I am a member and how I first came across this forum. What I didn't know was that Tom was just 26 when he was first diagnosed and only 49 when he passed away.
A truly inspiring man. You can read more about Tom here...
Despite his condition Tom had energy & drive enough for ten men. His dedication to finding a cure for Parkinson's was legend along with his excellent organisational & presentation skills. How he found the time mentor individuals like myself who have a passion for one area of development (in my case participating in clinical trials) always astounded me.
His spirit will live on & the foundations he helped to lay towards the day we celebrate the cure for Parkinson's!!!
I was at his funeral yesterday - what a wonderful celebration of a life lived to the full. The only person missing was Tom himself. We must all continue supporting CPT in their search for a cure in his memory.
That is young to die ? 49 did i get that right ? Were there other medical issues or just PD ?
I would be interested from anyone who knows more. What I do know was that he was involved with the GDNF trial in Bristol and was due to give an update this summer. I hope that his death wasn't related to the trial in any way.
Amgen the maker of Synthetic GDNF halted trials for safety concerns from what I know !
Parenthetically GM1, a natural molecule that relates to GDNF, in that it induces natural GDNF production, has no side affects, gone through Phase 2 trials for PD and of course Big Pharma has no interest in GM1 until they synthesize it in the lab. They have failed till now to synthesize appreciable quantities. Natural GM1 is available to be produced from sheep, but no one is making it sadly.
Tom has a large obituary write-up in today's Times Newspaper. I've copied and pasted below,
"When Tom Isaacs received his diagnosis of Parkinson’s disease he looked around him in the hospital waiting room and realised he was the youngest person by 40 years. “Some shook so badly the whole room seemed to reverberate,” he recalled.
Still only 27, he stumbled across an atlas as he was browsing medical dictionaries to understand his condition. Recalling a boyhood school project on the coastline of Britain, he resolved to walk it and raise money to find a cure. He covered 4,500 miles in 365 days and received more than £350,000.
By the end he had courted such a following that he co-founded the Cure Parkinson’s Trust. With self-deprecating humour that was typical of Isaacs — who began the walk on the Millennium Bridge in London because it was “wobbly” like him — the charity was initially dubbed “the Movers and Shakers”.
Isaacs often found himself welcomed into cities by several thousand people. He was offered free accommodation in homes and hotels. Strangers volunteered to drive his rucksack to the next stop. And once, as he crossed a field near Hadrian’s Wall, a farmer pressed two pound coins into his hands.
His back-up team were a band of friends and family, including his mother — who spent a year studying Ordnance Survey maps with him — and the woman who would eventually become his wife. One of their earliest dates was a leg of the Scottish Borders. Many kept him company along the way, including one friend who suggested that they pause for sustenance at Hay’s Galleria on the first day. “But I still have over 4,499 miles to go!” Isaacs protested. On the road, he lived largely on family-sized bars of Galaxy and pints bought for him along the way.
Once, arriving in an Essex pub, he found a large chalkboard sign outside, “Man walking around Britain in pub tonight. Come and support”. He was disappointed to think someone else was following the same route — until he realised the encouragement was for him.
He took run-down housing estates and seedy dockyards in his stride. Then there were craggy hills, peaceful fairways — and the occasional field full of bullocks. He got lost often. Joined for the day by the presenter Clare Balding for a BBC radio programme, he took wrong turning after wrong turning with the production crew following him. “Apparently getting lost made good radio,” he quipped.
There were also many bleak moments. Crossing a gushing river, he began to feel his body shaking. “One moment I am a fully functional human being, the next, almost totally incapacitated,” he said. “My journey time to the centre of the river had been about three seconds. The second half of the trip probably took 60 times as long.” At a Birkenhead ferry terminal he had another attack. “The only thing to do was to just ignore it and keep shaking.” To his grief, his father also died during the course of the year.
However, friends recalled that the most frustrated they saw him was struggling to open a tomato ketchup sachet for his chips after a long day.
By the end of the coastal walk he had generated “Coastin’ ” T-shirts, and headlines. He was met by the actress Liz Hurley as he arrived in London. She marched with him to the finish line.
Thomas William Isaacs was born in 1968 in Beaconsfield, Buckinghamshire, and grew up in Hertfordshire. His father was a solicitor in London and summers were spent in Suffolk.
Always small in stature — he joked in speeches that at 5ft 8in he knew how to keep things “short and moving” — Isaacs existed on a diet of “cheesy Wotsits” and Edam cheese after being diagnosed with coeliac disease aged six — something his schoolfriends considered exotic in 1970s Chorleywood.
With a penchant for Eighties rock ballads, he never lacked confidence. Attending a single-sex prep school, he was the only person prepared to play the role of Alice in Alice in Wonderland. And he enjoyed his schooldays at Merchant Taylors’ partly, as friends joked, because he only did things he liked.
Starting work at property agencies, he moved to investment companies and then became a chartered surveyor. He was so personable that he was best man at five weddings.
In 1996 Isaacs was living in a basement flat in Pimlico when his first symptoms of Parkinson’s began. On a bus he was overcome by shaking. “I felt like a seaside attraction — a sort of X-rated glove-puppet show.” One of the 5 per cent of Parkinson’s sufferers diagnosed young, he realised he could no longer live in denial — as he joked, he was entering “the Kingdom of Shakes”.
A PR friend drummed up support, patrons and coverage for “Coastin’ ” — although Isaacs was horrified when the friend insinuated that Muhammad Ali would be walking with him.
Shortly before he began the walk in April 2002, he met Lyndsey, a nurse from Glasgow, at a party. At their first date, a coffee in Islington, he told her that he was ill and about to spend a year walking around the country. On their first weekend together, trudging from Skipsea to Bridlington, he sang her Meat Loaf’s Bat out of Hell album. She joined him at Berwick- upon-Tweed to introduce her parents.
They got engaged in 2004 while walking in the Southern Uplands in Scotland. Isaacs was singing Hotel California and suddenly changed the words and got down on one knee.
From their house in Croxley Green in Hertfordshire, Isaacs worked full-time for the Cure Parkinson’s Trust, only dropping to four days a week a year before his death. Office days in London were spent responding to emails and writing speeches; often he would dictate them from the floor, where he was most comfortable waiting for his drugs to work. It could take 30 to 60 minutes in the morning before he could move.
The trust began in 2005 after Isaacs joined three older men with Parkinson’s, Sir Richard Nichols, a former lord mayor of London, Air Vice-Marshal Michael Dicken and Sir David Jones, the chief executive of Next. In his own words, they were “Three Big Cheeses and One Dairylea Triangle”.
At the time doctors accepted without question that Parkinson’s was incurable and strove only to alleviate the symptoms. “The word cure was never used . . . you know it was forbidden,” Isaacs said. The treatment was largely a drug that caused more side-effects.
Once described as “the most expert patient”, Isaacs focused on funding clinical trial programmes with new drugs. “I still maintain that one day I will be able to insert the words ‘used to’ when I say ‘I have Parkinson’s’. ”
Smooth and persuasive, he managed to get Damien Hirst and other artists, including Grayson Perry and Sir Peter Blake, to create pieces for a charity sale. In 2012 he was a torchbearer at the London Olympics, and three years later was given a personal audience with Pope Francis.
His eclectic tastes ranged from sport to karaoke and dancing round the kitchen table. He was more than happy to discuss the wine list with the sommelier in a Michelin restaurant — but also swore by TV suppers with James Bond or Friends.
He also continued to walk, whether it was the Leeds-Liverpool canal or, more recently, a short distance near his home with his dog. He liked to quote Martha Washington, wife of the first American president: “The greater part of our happiness . . . depends on our dispositions and not on our circumstances.”
He could only smile when, arriving home after his diagnosis in 1996, he had picked up a juice carton from the fridge to see the words, “Shake well before use”. It became the name of his memoir.
Tom Isaacs, co-founder of the Cure Parkinson’s Trust, was born on April 2, 1968. He died from Parkinson’s disease on May 31, 2017, aged 49"
I'm not sure about the truth of that last sentence.
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