Story
We are the GDNF Participants’ Group and we are fundraising £1,000,000 with all proceeds going towards further research into Neurotrophic Factors which have the potential to cure Parkinson’s.
Darren Calder, and Team Parky Pedal Power will be cycling Bristol to London over 3 days to raise funds and awareness for more precise research into a cure for Parkinson's. Darren says "I will carry the GDNF banner wherever I go until we get GDNF back into clinical trials but most importantly there is brilliant work continuing with Neurotrophic Factors which our 3 charities are supporting and we must shine a light on the advancements of science in this particular area. I believe within this work there is a disease modifying treatment for people living with the horrid disease that is Parkinson's and I will strive to make a difference in this area for the rest of my life"
Darren has been in training since August 2020 when he recruited cycling coach Richard Franklyn into his team. Rich is building up Darren's core fitness and endurance levels in order to make this journey. Henry Williams, Darren's nephew, Chris Wilkes, Darren's brother in Law and Gary Shaughnessy, who also has Parkinson's and is Chair of Parkinson's UK will be riding too with some meeting up on ZWIFT to train together! Darren says "When I rode Bristol to London 5 years ago it took me 4 days. This time around I am aiming to shave off a whole day. I am determined that my Parkinson's will not hold me back." Hopefully there will be some supporters along the way like Sharon Kane, CEO of Funding Neuro who is completing her Unifying Challenge by joining others walking, running, and cycling in different areas across the UK.
Many of the 42 individuals who participated in the Bristol GDNF clinical trial will also undertake this unifying challenge in September 2021, to highlight and support the future of neurotrophic factor therapies. The Teams who will complete alongside representatives of the Parkinson’s charities who funded the trial - will each run, cycle, walk or hike a total of 100 miles over 10 days. Each team will include participants themselves, their families, their friends and other supporters who, like the participants, believe in the future of neurotrophic factors.
The Dates
The challenge will take place from 1-14th September 2021.
Teams will then be able to celebrate success at a special event on 2nd October 2021at The Bristol Hotel.
A note from the man himself - I am Darren Calder. I was one of 6 who tested the safety of the delivery system used for the Parkinson's GDNF Phase 2 clinical trial back in 2013.This allowed 36 more incredibly brave participants, to take part in this medical trial which involved ground breaking brain surgery in order to insert a unique delivery system which would infuse the GDNF protein directly to affected dying brain cells. GDNF is just one type of Neurotrophic Factor under scientific investigation.
Despite the primary Phase 2 GDNF trial findings being disappointing, there is no doubt in the participants minds that this protein does have restorative brain cell capability and the participants are determined to prove this by raising funds to assist in bringing this powerful protein and other Neurotrophic Factors Like C-CDNF into the limelight.
Several million pounds and unification of the interested parties will be required to make this happen. The participants are determined their expertise will be utilised and are expecting there to be meaningful patent input at the heart of all levels of therapeutic development into NF. Crucially we aim to tap in to the resources of people living with Parkinson’s and their families to help us raise the profile.
For my part I need to dig deep to do my bit again. When I last rode my cycle from Bristol to London I had been diagnosed with Parkinson's for 12 years, was receiving GDNF and feeling great. Still, it took me 4 gruelling days to complete this challenge. This time I will be cycling Bristol to London again and aiming to complete the 150 miles in 3 days! I will have had Parkinson's for 18 years but I wont be receiving GDNF. I will be riding with some very special friends and together we will make up some of the 42 teams uniting to achieve an incredible 4,200 miles to complete the GDNF Participant's Unifying Challenge
The scientists are starting to recognise the potential in Neurotrophic Factors more broadly to unlock Parkinsons. The Participants want to Unify the community including charities Parkinson's UK, Funding Neuro and Cure Parkinson’s to:
- Raise awareness and urgency
- learn from the experience of the GDNF Participants by putting those affected by PD at the heart of trial design.
- Raise funds and sponsorship from those who are interested in supporting this deserving cause.
If you can help us then please donate and then go to www.gdnf.org.uk/ to find out more.