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The Background

When Tom Isaacs first met with Professor Steven Gill in 2003, it was the start of an incredible journey that changed the course of Parkinson’s research. With the results of Professor Gill’s clinical trial of the protein Glial-Cell Derived Neurotrophic Factor (GDNF) set to be published 27th Feb 2019 - the trial that Tom championed so passionately and went on to become a participant in - we tell Tom’s story behind this ground-breaking study.

Tom Isaacs co-founded The Cure Parkinson’s Trust (CPT) in 2005, and led the charity until his untimely death in 2017. He remained resolute that a cure for Parkinson’s could be found, and for him, a cure required the collaboration between excellent science and those people living with the condition.

Tom led from the front and one such collaboration began when Tom met with Professor Steven Gill,

“I had heard about the extraordinary results Professor Gill had achieved infusing a growth factor called glial-derived neurotrophic factor (GDNF) into the brains of five people with Parkinson’s. Their Parkinson’s had improved beyond all measure and brain scans indicated a regenerative process had begun.

At the time, Tom was walking the entire coastline of Britain to raise funds for research. This somewhat hurriedly arranged meeting took place at a service station on the Severn Bridge in 2003, but it changed Tom’s life and marked the beginnings of the now internationally renowned charity he went on to co-found. For the first time since his diagnosis in 1995 aged 26, Tom began to believe that there could and would be a breakthrough for Parkinson’s in his lifetime.

“Previously my talk of a cure had been hope. Now it seemed I could truly believe… After the meeting with Steven Gill, I had a spring in my step and practically decided there and then that it was Steve’s research into GDNF that should be the beneficiary of this walk. It was, after all, a treatment that could offer tangible improvements to people’s lives within a reasonable timeframe”.

In his book “Shake Well Before Use” which he wrote when his walk finished, Tom wrote:

“I had not even considered the prospect before, but suddenly I had a vision of my future. Here was a new take on everything. This was something that I could do with my life, not despite Parkinson’s, but because of it. It would be a chance to make a difference, however minuscule; to do something positive where my Parkinson’s would be a help, not a hindrance. I felt lightheaded, and a huge burden seemed to have been lifted from my shoulders. I felt, and still feel strongly, that although the cure may ultimately be about money and science, there has to be a momentum to galvanise each of these; to ensure the two are brought together in an effective, co-ordinated manner where commercial forces play second fiddle to progress. This driving force has to come from those affected. The push for the cure will be empowered by public opinion. This is where everyone can help. We can all make a difference.”

Tom forged links with and commanded the attention of neurologists, researchers and pharmaceutical companies. His presence and ability to speak knowledgeably and passionately about his condition inspired many people living with Parkinson’s. Tom presented a Radio 4 documentary - 'Young Man Old Body' and the follow-up ‘Chasing a Cure’ which were nominated for Sony Awards. 

Under Tom's stewardship CPT is now a key player in the world of research, funding valuable and relevant research for people with Parkinson’s, and setting up and co-funding the International Linked Clinical Trials initiative (a collaboration with Professor Patrik Brundin at the Van Andel Research Institute). Tom earned the respect and support of other such leading Parkinson’s researchers: Professors Andrew Lees, Anders Bjorklund, Roger Barker, and Tom Foltynie. 

“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.”

The Trial

Having funded some initial work with Professor Gill to create a more precise delivery mechanism in 2008, CPT then co-funded, with Parkinson’s UK and MedGenesis (the owner and developer of GDNF) a phase 2 clinical trial to assess the safety and effectiveness of GDNF.

In 2012 Tom enrolled in the GDNF trial at Southmead Hospital, Bristol. Lyndsey, Tom’s wife recalled:

“For me, Tom and the GDNF story are intertwined. It was the main reason he co-founded The Cure Parkinson’s Trust. So, in 2012 when plans were underway for the GDNF trial to start, it took only a short discussion for us to agree that he had to apply to take part.”

Tom said of his experience,

“I was the fourth patient of forty-three who underwent surgery to have catheters inserted deep into our brains into which GDNF or placebo would be infused.

The last four years have been a rollercoaster to say the least, but the team at Bristol, under the incredible guidance of Dr Alan Whone, have been extraordinary in their professionalism and care. The eighteen-month data from the trial is pivotal. The results are imminent. As a person with Parkinson’s who still believes in the man, the mechanism and the medicine this is a hugely frustrating period. Ultimately, the decision on the future of GDNF will be based on commercial viability and the effectiveness of the treatment compared to other therapies for Parkinson’s. We have all played our part in establishing this and we can be incredibly proud of being involved in this ground breaking and pivotal study. We can do no more than we have and regardless of the decision, the three rooms which house the data from the trial will be instrumental in helping progress future research in Parkinson’s. Either way we have undoubtedly made a huge contribution to the lives of everyone living with Parkinson’s.”

The GDNF trial has been truly innovative in the way the whole trial team - from funders, participants, neurologists, nurses and surgeons to pharma, device engineers, imaging experts and statisticians - have worked together through an incredibly complex trial. In a speech Tom gave at one of the participant meetings towards the end of the trial, he said of Steven Gill,

“Without Steve there would be no GDNF and none of us would be here. Steve, your unwavering enthusiasm and belief in what you are doing is inspiring. And you’re not too shabby with a knife either. Thank you for engraving a T for Tom on my head - I was actually going to go for an H but I was worried about helicopters landing on me.”

And to Dr Alan Whone, the clinician leading the trial,

“Alan your generosity, spirit and humour has been the reason that compliance on this trial has been so good. No one could have done more, cared more, given more time.”

Tom’s benevolent determination and self-effacing humour defined him and this is reflected in the upcoming BBC documentary which followed Tom and 8 other pioneering and brave participants through each of their GDNF trial journeys. The first episode of the two-part documentary ‘The Parkinson's Drug Trial: A Miracle Cure?’ is available to re-watch here. The second episode will be aired on 7th March 2019 at 9.00pm on BBC 2.                                                                                                                                                                                                                                                                                                                                                                   

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Tom established the importance of the voice of people with Parkinson’s - Read more about Tom's impact within the research arena.