In this special Parkinson Awareness Month episode of When Life Gives You Parkinson’s, I chat with leaders of three Parkinson’s organizations about the never-ending hunt for a cure.
The world has been five years away from a cure for Parkinson’s for the last 30 years or so — that sentiment is an update from when Tom Isaacs uttered a similar phrase in the early 2000s. Isaacs had Parkinson’s and was a fierce advocate for those living with the disease. He co-founded the Cure Parkinson’s Trust in England in 2005.
Today, that organization’s deputy CEO, Helen Matthews, continues to carry his torch. She says we are an awful lot closer to a cure than we were 15 years ago.
However, “for there to be a game changer,” Matthews says, “Parkinson’s needs to be a global health priority recognized by governments globally who are properly investing in this.”
Matthews points to Australia, where the government has allocated $30 million over five years to identify disease-modifying drugs to slow the progression of Parkinson’s.
“You know, we need further injections of cash here in the U.K. We need further injections of cash in Canada,” Matthews says. “We need consortiums working in all territories. You know, North America really investing and making sure that Parkinson’s is a health priority.”
Parkinson Canada has requested $30 million over five years from the federal government to establish the Canadian Open Parkinson Network. C-OPN would be a shared, open data platform with the goal to accelerate breakthroughs, improve patient outcomes, increase clinical trial involvement and ultimately find a cure for this life-limiting disease. It would establish Canada as another leading country in the global commitment to ending Parkinson’s disease.
The 2020 federal budget was to be unveiled on March 15 but has been indefinitely delayed due to the coronavirus pandemic.
Marking 20 years in operation and having invested $1 billion in Parkinson’s research, the Michael J. Fox Foundation has learned a thing or two over the past two decades.
Deputy CEO Sohini Chowdhury is grateful the organization has raised such a mind-blowing amount of money for research but is careful to keep it in perspective.
“When you think about drug development in general, the numbers that are often cited are that it takes anywhere between 12 and 15 years to get a drug moving through the development process and into patients’ hands and that it can cost upwards of a billion dollars, that entire process,” Chowdhury says.
At Parkinson’s UK, chief executive Steve Ford and his team have committed eight million pounds, equivalent to more than C$14 million, to Parkinson’s research each year. Ford also has helped to establish the Critical Path for Parkinson’s Consortium.
“We’ve brought together foundations from around the world; the Fox Foundation and the Parkinson’s Foundation are involved in this,” Ford says. “Ten or 11 global pharmaceutical companies are involved as well.”
He continues: “And what this is doing is bringing everybody together, sharing data, drug company data, clinical trial data and the kind of data that some researchers all around the world have from following patients up over a number of years. All that information is used to shape the future of clinical trials and to work with the regulators to get that kind of approved.”
With this approach, individual companies do not have to go and get their own kind of trial design approved by the regulator and spend millions of dollars doing that. The Critical Path for Parkinson’s Consortium can do that on behalf of the whole industry, which dramatically reduces the costs of designing new research studies.
As more than 10 million people with Parkinson’s in the world await the elusive cure, we hold on to hope and Tom Isaacs’ belief that a cure is possible.
If you have a comment or question about the podcast, you can email us at parkinsonspod@curiouscast.ca.
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Follow me, Larry Gifford
Twitter: @ParkinsonsPod
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Follow co-host and producer Niki Reitmayer
Twitter: @Niki_Reitmayer
Special thanks to…
My wife and partner in Parkinson’s, Rebecca Gifford
Helen Matthews, deputy CEO, Cure Parkinson’s Trust — follow CPT on Twitter: @CureParkinsonsT
Steve Ford, chief executive, Parkinson’s UK — follow PUK on Twitter: @parkinsonsuk
Sohini Chowdhury, deputy CEO, Michael J. Fox Foundation for Parkinson’s Research — follow MJFF on Twitter: @michaeljfox.org
Our presenting partner is Parkinson Canada.
The organization’s toll-free hotline is 1-800-565-3000.
Follow Parkinson Canada on Twitter: @ParkinsonCanada
Our content and promotional partners
Parkinson’s IQ + You — A free series of Parkinson’s events from the Michael J. Fox Foundation.
Spotlight YOPD — The only Parkinson’s organization dedicated to raising awareness for young onset Parkinson’s disease and funds for the Cure Parkinson’s Trust.
WPC2022 — Save the date for the sixth World Parkinson Congress, June 7 to 10, 2022 in Barcelona, Spain. The only inclusive scientific conference opens its doors to people with Parkinson’s and families.
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