On this episode of When Life Gives You Parkinson’s, despite some setbacks, there is still an appetite to trial a treatment for Parkinson’s that many believe is the antidote. GDNF, or glial cell line-derived neurotrophic factor, is naturally occurring and vital for normal functioning of the brain. But when GDNF is delivered directly to the brain, for some people, it is as if they’ve never had Parkinson’s.
The Phase II GDNF trial at the University of Bristol seemingly was made possible through the sheer will and force of the late Parkinson’s advocate Tom Isaacs and his Cure Parkinson’s Trust. The broadcast of Tom’s BBC Radio 4 documentary, Chasing a Cure, about the treatment was heard by Vicky Dillon. She vowed if a trial ever came around again, she’d sign up. And she did.
“We were the guinea pigs basically to see if we would tolerate the surgery and the insertion of all this plumbing in our brains.
“They cut me from my hairline to like the middle part of my head and then put in all four catheters that went deep into my brain,” she said. “And then you had another bit of plumbing that runs down the side of your head to a port behind your left ear, which is where the infusions were given. So, there was quite a lot of stuff in there.”
Vicky was given GDNF for the better part of two years. Her symptoms improved almost immediately.
“By the time I took the second infusion, I noticeably felt different. I remember waking up a couple of days afterwards and there was no Parkinson symptoms for about an hour or so. I thought, ‘Oh my God!’ And gradually everything started getting better.”
Vicky’s symptoms improved 63 per cent, and on PET scans, all the participants showed potential for reawakening and restoring damaged brain cells, but the trial did not meet its primary endpoint.
“That’s ridiculous,” says Jayne Calder.
Her husband Darren was also in the trial and it improved his symptoms more than 50 per cent.
“Without any doubt whatsoever, in 100 per cent of those participants’ minds, we have got the cure for Parkinson’s.”
Vicky and Jayne are leading the charge to raise awareness and money for another trial. They have been very vocal. They’ve even recorded a song called Shine by the G.D.N.F.ers. Each download includes a donation to another GDNF trial.
They have also caught the attention of Parkinson’s UK. The organization’s chief executive Steve Ford is ready to throw massive amounts of money towards the project if everything on the application looks right.
“We spend around eight and a half million pounds annually. That’s $11 or 12 million a year on research. We haven’t seen the application yet, but we envisage it’s going to be in the order of an annual spend on research. So, that’s not significantly more than we’ve ever spent before.”
Recruiting for the next GDNF trial is expected to begin by the end of 2020 or early 2021.
If you have a comment or question about the podcast, you can email us at parkinsonspod@curiouscast.ca.
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Special thanks to…
Thank you to my wife and partner in Parkinson’s Rebecca Gifford.
Also, thank you to the following contributors and guests:
Vicky Dillon
Darren & Jayne Calder
Steve Ford, Parkinson’s UK
Helen Matthews, Cure Parkinson’s Trust
BBC Radio 4
Passionate Productions for BBC
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 in 2022. The only inclusive scientific conference opens its doors to people with Parkinson’s and families.
Links we mentioned and source material for the show:
U.S. TRIAL | Phase 1 trial of GDNF is slated for 2022 will test viral vectors for delivering GDNF in escalating doses.
RADIO DOCUMENTARY | BBC Radio 4 Chasing a Cure with Tom Isaacs
WEBSITE | ScienceofParkinsons.com
FUNDRAISER | Raise a Million for GDNF by Darren & Jayne Calder
FUNDRAISER | Shine performed by GDNFers and written by Vicky Dillon
EDITORIAL | Where Are We One Year On by Steve Ford, Parkinson’s UK
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