In 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 are naturally occurring and are 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 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 it 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,” she said. “They cut me from my hair line to like the middle part of my head and then put in all four catheters that went deep into the into my brain. And then you had another bit of plumbing that run down the side of your head to a port behind you 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 symptom improved 63% and all the participants showed cell regeneration on PET scans, but the trail did not meet its primary end point. “That’s ridiculous,” says Jayne Calder. Her husband Darren was also in the trial and it improved his symptoms more than 50%. “Without any doubt whatsoever in 100 percent 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 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 eleven or twelve million dollars 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 significant more than we've ever spent before.” Recruiting for the next GDNF trial is expected to begin by the end of 2020 or just after the first of the year 2021.

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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 UK

Follow me, Larry Gifford 

Twitter: @ParkinsonsPod

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Follow Co-host and Producer Niki Reitmayer

Twitter: @Niki_Reitmayer

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 U.K.

Helen Matthews, Cure Parkinson’s Trust

BBC Radio 4

Passionate Productions for BBC

Our presenting partner is Parkinson Canada http://www.parkinson.ca/

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