42 teams traveling 100 miles each, representing the 42 participants of the original GDNF trial
Many of the 42 individuals who participated in the Bristol GDNF clinical trial will undertake a unifying challenge in 2021 to highlight and support the future of neurotrophic factor therapies. Each team will include participants themselves, their families, their friends and other supporters who, like the participants, believe in the future of neurotrophic factors - that includes me!
Some of the participants are not well enough to take on the unifying challenge, and for each of them, hopefully there will be someone like me to complete the challenge on their behalf. I'm honoured to be representing Ron Johnson, who if you've seen the documentary, expressed his reason for being part of the trial as "just wanting to play football with his grandson".
Ron was officially diagnosed in 2006, but as seems to be the case with most people thinks it was present much earlier! Ron is an ex. Member of the RAF, and was always very fit and active playing sport representing the Air Force in some sports. He thinks that his Parkinson's started some time in his sixties. Fortunately he was still able to work, and was also able to take part in caring for his twin grandsons. The acceptance on to the GDNF trial was a miracle and filled Ron and his wife May, with so much hope. Ron did very well with the whole experience. Sadly that benefit is no longer present.
There are still a few team spaces left, so why not get in touch?
Team leader Andy Hobbs
My team is called ‘Drewsters Millions’ (obviously) I was diagnosed with Parkinson’s at the age of 49, though with the benefit of hindsight, I had symptoms for as much as ten years prior to that. I originally intended to fly solo on this challenge, and when the dates changed from April to September I decided to do it in both months to focus my mind on the training I’d already started. I rode 100 miles in the first 10 days of April, then another 100 miles on World Parkinson’s day, 11th. I was hugely grateful to some friends who joined me for the “100 mile day”, and those helpers have now turned into team members as we gear up for September. I will repeat the 100 mile challenge with my wife, Sharon, and friend Katie, while Neil, the chief mechanical support, safety officer and motivator in April, will run for 24 hours from 6pm the day before, on the same 2 mile loop, to see how much distance he can cover … if he ever overtakes me, I’m getting off my bike in a strop and leaving it wherever it falls! I first heard about GDNF through my involvement with the Research Support Network of Parkinson’s UK, and subsequently met some of the participants from the trial at related events. The documentary on BBC (The Parkinson’s Drug Trial: A Miracle Cure?) was really powerful, my own research involvement shows me how little, proportionately at least, research is focused on disease modifying treatments, most concentrate on symptom management, so when I saw the improvement achieved by some I knew there was clearly something happening (https://www.bbc.co.uk/programmes/p072vjll). On World Parkinson’s Day 2020, I decided to repeat Darren’s sit/stand test and the result socked me, Sharon was videoing my attempt and ultimately we put it on Facebook to show some of the challenges of living with PD - I find it a really tough watch, but it's still here..> https://www.facebook.com/779022159/videos/10158485860602160/ GDNF clearly does something, and for it to be shelved at this stage is frustrating in the extreme for patients worldwide, so how it must feel for those who got the benefits only to have the drug taken away I can barely imagine - the story needs to run its full course, and that’s why I’m here, turning myself inside out to cycle 100 miles in 10 days, and ultimately 200 miles in 11 days. In the unlikely event that I finish the 100 miles before Neil finishes his 24 hour endurance, I will join him to the end.