Tom Isaacs – late Co-founder & President, Cure Parkinson’s

“So how has the task of finding better treatments for Parkinson’s made me more passionate, more determined and more fulfilled in my life than I ever thought possible? The answer to this question is simple. It’s the people. My involvement with Parkinson’s has been motivated solely by the brilliance of scientists, the generosity of philanthropists, the selflessness of those friends or family with Parkinson’s and, above all else, the incredible ability of the human spirit to overcome extreme adversity of health. It is the knowledge that these people are out there; that there is the ability, the resource and the will to make a difference and improve the lives of those of us who have Parkinson’s, which has given both me and all my colleagues at Cure Parkinson’s our sense of purpose, enthusiasm and commitment. It is humbling to know that so many fantastic people are out there and that their sole mission is to rid the world of Parkinson’s” – Tom Isaacs 

When Tom Isaacs set up Cure Parkinson’s in 2005, he was determined to conquer the disease for everyone living with Parkinson’s and he bravely and single-mindedly fought to achieve this aim. Under his guidance, Cure Parkinson’s has become a key player in the world of research, setting up and funding the International Linked Clinical Trials initiative and taking a leading role in research conferences throughout the world. Tom’s total comprehension of the biochemistry behind his condition enabled him to take part in scientific discussions at the highest level. He earned the respect and support of such leading Parkinson’s researchers as Professors Andrew Lees, Anders Bjorklund, Patrik Brundin, Roger Barker, Tom Foltynie and Steven Gill.

Tom Isaacs qualified as a chartered surveyor and was working as a director of a London property company when he was diagnosed with Parkinson’s (PD) in 1995 – he was just 26. At that time, scientists and doctors accepted without question that Parkinson’s was an incurable condition and drugs were prescribed to alleviate symptoms of the disease. Progress in research was slow and pre-clinical work was focused on cause and needed to be more coordinated. Tom simply could not accept this and began asking “why?” and investigating the underlying state of affairs in the Parkinson’s community and research arena. He determined that one day he would be able to insert the words “used to” when he said, “I have Parkinson’s”.

Sadly, that was not to be; but his incredible work in the intervening years between diagnosis and his death on 31st May 2017 at the age of 49 has brought this vision tantalisingly close for the many others with the condition.

From the outset, the focus for Tom had to be about a cure.

“The word ‘cure’ was never used… you knew it was forbidden; cure was seen as a false hope – and actually, if you don’t have hope in Parkinson’s disease, you don’t have anything. Back then we needed something focused on the research not just on the care… and it needed to be more edgy, more feisty…”

Tom’s single minded approach to his condition gave him the tenacity to set himself on a clear path.

“My walk ‘Coastin’’ provided the platform for everything that was to follow and led to my meeting seven extraordinary people without whom Cure Parkinson’s simply would never have come into being. The “magnificent seven” were my wife, Lyndsey; Professor Andrew Lees, who at the time was my neurologist, the other three original “movers and shakers” Sir David Jones, Sir Richard Nichols and Air Vice Marshal Michael Dicken, fellow people with Parkinson’s; Professor Steven Gill from Frenchay Hospital, Bristol; and a remarkable and industrious force of nature in the form of Helen Matthews. Two years after Coastin’, we set up Cure Parkinson’s – determined to help the push towards a cure in any way we could.”

Tom’s incredible sense of humanity and amazing talent for bringing people together when most needed was truly an irresistible force.

He used his charm and single-mindedness to forge new links between scientists and patients while remaining unafraid to criticise science when he felt it was too divorced from the everyday reality of living with Parkinson’s. “This is me… This is us.” he said, “Find the cure.”

In 2006, CPT organised a fund-raising game against the Royal Household Cricket Club. Fortuitously, one of the players on the Royal Household team turned out to be a distinguished paediatric cardiologist, a Council Member of the Royal Society of Medicine, and an expert in evidence-based medicine. His name – Dr Richard Wyse.

“He had the feisty, irreverent manner that matched the new organisation… which is exactly what we needed… so we let him loose to see what damage he could do, and he did some real damage. He dared to challenge a few scientists, but gradually people realised he knew what he was talking about and he soon became a bit of an expert on everything.”

Together, Tom and Richard Wyse began forging ahead with international collaborations. The first was with Swedish neuroscientist Patrik Brundin (of Van Andel Institute in Grand Rapids, Michigan) to develop a programme to investigate existing drugs with a view to “repurposing” them for PD and their likely impact and ability to slow, stop or reverse the condition – the International Linked Clinical Trials initiative (iLCT). The iLCT is now firmly established. Tom’s name appears on the first report by the iLCT committee, which is published in the Journal of Parkinson’s Disease. Tom is also a co-author on a paper testing the diabetes drug Exenatide for Parkinson’s, which is published in the Journal of Clinical Investigation and he has co-authored many other papers in Parkinson’s studies.

Another collaboration with the University of Tuebingen emerged from a presentation Tom gave at the World Parkinson Congress 2010 in Glasgow where he highlighted the need to find better ways to monitor the progression of PD. Tom led the charity’s involvement in an EU funded project to capture information about how PD progresses in different patients. Understanding what is happening to a person with Parkinson’s affects how they are treated (leading to personalised treatment plans) but also if accurate measurement is used in clinical trials rather than a clinical snapshot, Tom recognised that this would allow the chance to see if a treatment is actually changing the course of the disease.

Tom’s ability to communicate with people from every background was exceptional. Speaking in the Vatican about stem cells led to an audience with the Supreme Pontiff, Pope Francis (and inspired Tom’s delightful and humorous own song – ‘Grow every stem cell..!’). Tom worked closely with the Michael J. Fox Foundation and was adept at recruiting celebrities whose lives or families had been affected by the disease. He was impressive on the radio, walking with Clare Balding in 2003 and then again in a follow-up in 2015 for her ‘Ramblings’ programme. He was interviewed on all Parkinson’s related stories on a number of occasions with Jeremy Vine on his BBC Radio 2 programme. Tom presented a Radio 4 documentary – ‘Young Man, Old Body’ and the follow-up ‘Chasing a Cure’ which were both nominated for Sony Awards. He also appeared on BBC Radio 4 ‘Mid-Week’ to launch his book “Shake Well Before Use” (over 4.5k copies sold); was named ‘Charity Personality of the Year’ in 2004 and was an Olympic torchbearer in 2012! A brilliant and inspirational speaker, his self-deprecating humour put his audience at ease despite the flailing arms and loss of balance caused by his Parkinson’s. “I’ve been asked to be short but moving,” he would declare, “and at 5 foot 7 I’m certainly short and… I’m always moving.” His immense personal charm endeared him to everyone he met, winning new supporters for the charity. Above all, he inspired people with Parkinson’s, giving them hope and a belief that their voice was being heard.

“From the trust’s inception we believed that it was critical that we made sure every research project we supported was evaluated by, and relevant to, people living with Parkinson’s. As we were founded and led by people with Parkinson’s, we remain true to these guiding principles. The involvement of people with Parkinson’s in every aspect of our work has led to the growing importance and influence of our ambition. There is one thing that motivates me more than anything; it is the idea of finding a deliverable treatment that can reverse the course of this cruel illness. I believe that this is attainable. For me, one of the biggest challenges – and yet also the biggest opportunity – is galvanising people who live with Parkinson’s from day to day to engage with their condition. If everyone with Parkinson’s were to communicate their experiences of living with Parkinson’s; if everyone participated in clinical trials; if everyone took the time to become more knowledgeable and was more committed to partnering the scientific community in the search for new treatments, then there is no doubt in my mind that progress can be accelerated in Parkinson’s research.”

Tom’s incredible achievements within the Parkinson’s community and with the Trust he co-founded did impact on his health. After 23 years with Parkinson’s, each day was a huge physical battle for Tom. His Parkinson’s manifested itself in erratic fluctuating ‘on’ and ‘off’ periods with the medication, and often with painful dystonia or cramping. He experienced unyielding dyskinesias and was seldom able to remain still; his body continued to move fitfully and uncontrollably and problems with balance meant he frequently fell – there was no physical or mental quiet for him. But part of Tom’s legacy is that he never shied away from showing the reality of Parkinson’s, and he continued to stress the urgent need for a cure.

“Few patients enjoy hearing the word incurable when initially diagnosed. There is no more dispiriting word in the language than one which eliminates ‘Hope’ and without hope of a better future how can anyone expect to enjoy a decent quality of life in the present. Try asking a newly diagnosed patient whether they would prefer to be treated or cured.”

Of course it takes more than hope and, through Cure Parkinson’s, Tom made sure ‘there’s money where the mouth is’ – money for research and to champion those drugs or treatments that offer the best chance of a cure.

By putting himself out there, even as the going got tough, he never let anyone forget why a cure is needed; but it was never in a way other than to inspire – and he was certainly inspirational!

It remains the mission of this charity to continue with Tom’s vision; to fulfil his dream and to inspire others to join the team and fight on. A cure is out there: we are more determined than ever to find it.

Note:

Tom Isaacs died on 31st May 2017 of an undiagnosed heart condition that was unrelated to the clinical trial he participated in.