Ten years of searching for a cure: Tom Isaacs, President and Co-Founder of The Cure Parkinson’s Trust

Posted in Personal Perspective on 21st Sep 2015

ACNR-SO15-full-high-rez-16Having been diagnosed with Parkinson’s at the age of 26, it took me at least three years to really accept the condition as part of who I am. At the time, I had no idea how the remorseless assault that Parkinson’s has on mind and body would lead me to a place where Parkinson’s embraces almost everything I do. Although coping with my own advancing Parkinson’s has defined the path of most of my working life, oddly, it has never been my inspiration. I don’t believe Parkinson’s inspires anyone. Certainly, Parkinson’s has only ever been a destructive and soul sapping force in my life.

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 The Cure Parkinson’s Trust our sense of purpose, enthusiasm and commitment.

I was told I had Parkinson’s in 1996. Like most, I went through a period of sadness, anger and denial, but in 1999 I decided I would walk from John O’Groats to Lands End to raise funds for research into Parkinson’s. I was staggered by the amount of support I received and three years later felt the urge to attempt the bigger challenge of walking 4,500 miles around the coastline of Britain. The walk, “Coastin’” provided the platform for everything that was to follow and led to my meeting seven extraordinary people without whom The Cure Parkinson’s Trust 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 with whom I have now been working for thirteen years.

Two years after “Coastin’”, we set up The Cure Parkinson’s Trust determined to help the push towards a cure in any way we could.

Although none of us really knew much about setting up a new charity, we did know what we wanted to achieve and the type of people who could enable us to realise our goals. A key appointment was Dr Richard Wyse who became involved after chairing a meeting on delivery mechanisms for us in Windsor. His determination to defeat Parkinson’s remains as strong today as it was ten years ago. His capacity to read and retain information and to drive new science forward so that it has the best opportunity to be converted quickly into new treatments, has shaped much of our research strategy and we have been fortunate that he has been so committed to our cause.

It was Richard who was responsible for master-minding our Linked Clinical Trials programme (LCT) which is now in it’s fourth year.

This initiative provides the means to bring treatments already in use in other conditions and to assess their application and effectiveness in Parkinson’s. Every year, Dr Wyse produces dossiers which make the case for any number of compounds which, from the data available, suggest that they might have a mode of action which could benefit people with Parkinson’s. The dossiers are prioritised by twelve of the most renowned Parkinson’s specialists from around the world in order of their likely impact and ability to slow, stop or reverse the condition.

The first Linked Clinical Trial that took place was on a treatment for diabetes called Exenatide undertaken by Dr Tom Foltynie at UCL London. This not only generated enormous interest in the potential of similar GLP-1 agonists for use in Parkinson’s, but also defined the template for other LCT studies that were to follow. The LCT initiative is now also backed by the Van Andel Research Institute whose Associate Director, Professor Patrik Brundin also chairs the LCT Committee. Over seventy compounds have been assessed since 2012 and twenty novel approaches to treating Parkinson’s have now been prioritised and are at varying stages of development and further analysis. The six most recent examples of prioritised compounds going into trial are:

  1. Simvastatin – a trial about to start at 25 UK centres under the leadership of Dr Camille Carroll from Plymouth University.
  2. Deferiprone – a pan-European study, funded by the EU, commencing in January 2016 involving 300 patients.
  3. Liraglutide – another treatment for diabetes is under way at Cedar Sinai Hospital in Los Angeles.
  4. Mitochondrial target – one of the prioritised compounds which has been shown to have an effect on dysfunctional mitochondria is due to move into a clinical trial in London and Boston in the Autumn.
  5. Ambroxol – we expect to start funding a clinical trial in the UK in the very near future.
  6. N-Acetyl Cysteine – the trial protocol is being finalised and a study is expected to start in California

The Cure Parkinson’s Trust funds both pre-clinical and clinical research. Our Research Committee is chaired by Dr John Scadding and supported by some of the UK’s most inspirational scientists and clinicians. Their “can-do” attitude and ability to select the most important projects for the charity to fund has allowed us to grow and acquire a reputation for delivering excellent science with the capacity to accelerate tangible differences to the way Parkinson’s is treated.

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 have remained 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 advocacy arm, Parkinson’s Movement (PM). This year PM has created a Clinical Trials Charter to help deliver better communication within clinical trials. It has also hosted Research Club events, conducted patient-designed experiments, supported recruitment drives for clinical trials and later this year, will be designing a rating scale for new apps and devices to evaluate them in terms of their usability.

One of the most important pieces of work in which our involvement has been pivotal, has been our support of the work of Professor Steven Gill in Bristol. On the fifth day of my walk around the coast, a news story broke announcing the results of a pilot study infusing a growth factor, GDNF (glial-cell line derived neurotrophic factor) which showed remarkable improvements to the five patients involved. I was in Essex at the time and some 3,000 miles later, I met Steven Gill at the service station at the end of the Severn Bridge. It didn’t take a scientist to see the potential of his work and having met the man I was convinced that Gill, GDNF and the work needed to improve the delivery of this molecule into the brain had to be supported. It was the closest thing I had seen to a cure.

It took ten years from that M4 service station to get GDNF back into trial – that’s some traffic jam even by M4 standards! Nevertheless, the results of the phase II study are due in mid to late 2016 and we are delighted to be funding this trial jointly with Parkinson’s UK.

The last ten years has been an extraordinary journey. We have funded and facilitated millions of pounds worth of research. We have been responsible for uncovering scientific discoveries which could lead to a breakthrough. We have met and brought together some truly inspirational and generous people, scientists, fundraisers and people with Parkinson’s. I still maintain that one day I will be able to insert the words “used to” when I say “I have Parkinson’s”.

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www.cureparkinsons.org.uk
www.ParkinsonsMovement.com

ACNR 2015;15(4):16-17.  Online 21/09/2015

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