Will Cook's Mission to Cure Parkinson's

Will Cook, CEO Cure Parkinson’s

“It is about friendship. It is a love story of sorts….. but it's also an evidence based biomedical story.”

In a private members’ club situated in what was the very BBC office where I worked for 20 years Will Cook is telling me the story of how he came to give up a lucrative job as a City lawyer to run Cure Parkinson’s. As with so much of our interview he veers in one sentence between passionate intensity and emotion and the cool, forensic analysis of the top patent lawyer he was for 30 years.

The friendship which changed everything for him was with Tom Isaacs, who he met at 11 and who was diagnosed with Parkinson’s at 26. “He was an extraordinary individual,” he says of his friend, “extraordinary life force, charm and wit.” It was Tom who raised an extraordinary amount of money with a marathon and other events and set up Cure Parkinson’s when other charities refused to spend it all on research as he wanted. “They said we don’t use the word ‘cure’, Tom, we don’t want to give people false hope.”

Will became heavily involved as a trustee of the new charity, using his legal expertise to help get deals done that would fund drug trials. And when Tom Isaacs died aged 49 in 2017, he saw it as his duty to his friend’s legacy to take over.

I put it to him that the very name “Cure Parkinson’s” is pretty stark and maybe there really is a danger of giving false hope - so how does he define the charity’s mission? “Slow, stop or reverse (Parkinson’s) in the clinic within five years - that’s our mantra.”

That might sound like a watering down of “cure” but for sixty years Parkinson’s drugs have made little progress, temporarily masking some of the symptoms but not stopping the progression of the disease. Now there is real hope that a drug that can at least slow down the decline of someone with Parkinson’s may be on the horizon.

Will explains that Cure Parkinson’s funding is applied in three areas:

•  Disease Modification through International Linked Clinical Trials (iLCT)

  This is a programme which takes existing drugs for conditions like diabetes and tries to adapt them to battle Parkinson’s. “We bring together 20 of the leading neurologists and neuroscientists. We provide dossiers to them each year of the best drugs that could be repurposed - they prioritise the top five of those, and it's those that we focus on.” 80% of the charity’s funds go on iLCT

• Neurotrophic factors

  This involves using small proteins to encourage the growth and survival of healthy nerve cells in the brain. This is still at quite an early stage but Cure Parkinson’s is funding research into a protein called CDNF which shows promising signs that it can protect and regenerate dopamine neurons.

• Cell Replacement Therapy.

  Just as in many other areas of medicine, Parkinson’s researchers are looking into what stem cells might promise, hoping that new dopamine cells could be inserted into the brain. With the pharmaceutical industry spending heavily in this area a small charity can’t hope to make much of an impact but Cure Parkinson’s has funded a small Cambridge University trial which has seen 13 people receive transplants of dopamine neurons.

It is clear that, in terms of giving hope in the short-term to people with Parkinson’s, it is two drugs from the iLCT disease modification programme which are best placed to achieve something within the five years of Will Cook’s “slow, stop, reverse” mantra.

Exenatide is a diabetes drug now undergoing a phase 3 clinical trial - the last stage before regulatory approval - after showing signs at phase 2 that it could halt the progression of Parkinson’s. Cure Parkinson’s is helping to fund a couple of studies relating to the trial. including one which will use smartphone technology to measure how the trialists’ motor symptoms are affected by the drug.

But the charity’s big bet and the one that really seems to get Will Cook fired up is on Ambroxol. Surprisingly, this is a pretty simple drug, a cough medicine, but stage 2 trials have shown it may have an effect on improving the brain’s waste disposal system, producing healthier cells and thus slowing the progression of Parkinson’s.

As we speak, Will is in the final stages of tying together the funding package which is designed to make sure a phase three trial of Ambroxol can go ahead soon. He stresses that, initially at least, the drug could at best slow, not stop or reverse the disease. Is that really a cure? He still believes that’s a lot better than what the current drugs do:

“Reverse is the most pure definition of cure. But all three - slow, stop, reverse - are completely different to symptomatic masking.” And it’s all part of the progress towards the goal of changing “the underlying physiology of the brain, the disease pathway.” For a charity with just £15 million to play with - that is the amount it has spent so far on research - this feels hugely ambitious. When giant pharmaceutical companies are spending billions and even the Michael J. Fox Foundation has far bigger sums at its disposal why does Will feel Cure Parkinson’s can make any difference?

He says that on top of that £15 million the charity has persuaded others to contribute at least £100 million to cutting edge clinical research. And while other charities do a range of valuable things for the Parkinson’s community, his is laser-focused on just one task:

“What we're about is clinical, clinical clinical. We are an international catalyst for ‘cure’. We bring funders together, we prioritise, we drive it forward, and then bring the funding group together to fund what we think is right.”

Again, his passion shines through, along with his impatience with anybody who doesn’t share his sense of urgency. As our intense sixty minute conversation draws to a close, I put it to the charity boss, who’s off to New York at his own expense next weekend to raise funds by running in the marathon, that he must be difficult to work with.

“I’m utterly driven, utterly focused,” he admits. The charity world, he says, moves at a slower pace than his previous existence as a corporate lawyer, with lots of meetings where everyone has to have their say and be brought on board before decisions can be made.

“I'm not that person, all I can do is lead as I think it's got to happen.”

But with that he is off - to another blizzard of meetings and phone calls to build a coalition of funders for a clinical trial. It sounds exhausting to be Will Cook - or anyone that has to deal with him. But I am just grateful, as I suspect are many across the Parkinson’s community, that someone with such energy and commitment is pursuing a cure.