Burnham-On-Sea Parkinson’s sufferer John Thatcher is set to take part in a unique fundraising challenge for charities trying to find a cure for the disease.
John will be cycling 100 miles over two days as part of a team of Burnham fundraisers.
It comes as a group of people with Parkinson’s have brought together the UK’s three leading Parkinson’s charities to raise awareness of the need for a cure for the fastest growing neurological condition in the world.
They have organised a unifying challenge to bring together people with Parkinson’s and the charities – Parkinson’s UK, Funding Neuro and Cure Parkinson’s – with the aim of changing the outcome for the millions of people living with this disease.
“This is no ordinary group of people, as the majority have participated in one of the most invasive, ground-breaking trials ever conceived,” says John.
“Risky brain surgery to install catheters deep into the brain was followed by monthly infusions of an experimental protein called GDNF.”
“While this clinical trial of GDNF did not meet its primary endpoint (this is a pre-determined measure of efficacy), there were some very interesting findings. The brain imaging data, for example, suggested that GDNF was having a biological effect in the brain.”
“But importantly the clinical findings of the study did not mirror the participant’s experience in terms of benefit.”
Examples of this were demonstrated in the award-winning BBC2 TV documentary The Parkinson’s Drug Trial: A Miracle Cure?
So strong is the belief of the trial participants, they are still campaigning for further research four years later.
This week, they are launching a challenge to raise awareness of Parkinson’s and the potential of neurotrophic factors to provide a cure.
42 teams will cover 100 miles in 10 days – many of those taking part will be struggling with the symptoms of Parkinson’s including stiffness, fatigue, and cramps.
They will be working alongside the three charities who funded the original GDNF trial in Bristol from 2013 – Parkinson’s UK, Funding Neuro and Cure Parkinson’s – in this event.
John adds: “Government funding has been repeatedly promised but not forthcoming, so they will also be handing a petition in on 11th April, World Parkinson’s Day, demanding more investment into research and prioritisation of the need to stop, slow down or reverse this degenerative and rapidly spreading condition before it is out of control.”
“They need your support to make your local community aware of the sacrifices they have already made and the sheer determination they continue to display in their quest to improve the future for generations to come.”
Please visit https://www.justgiving.com/fundraising/CrosswaysPitStop to donate to John’s fundraising.
In 2009, John diagnosed with Parkinson’s disease. Approximately 1 in 500 people suffer from this condition, which is progressive, highly debilitating and currently incurable, and the fastest growing neurodegenerative condition in the world.
In 2013 he had brain surgery to allow me to take part in a clinical trial of GDNF, a neurotrophic factor. By the end of 2016, and after over 20 direct brain infusions of GDNF, he had seen some remarkable improvements in his condition, as had the other 41 co-participants.
Unfortunately, the measurement system used to gauge the success of the trial was incompatible with the true symptoms of Parkinson’s and the trial was deemed to be a scientific failure. The trial ended and John’s condition deteriorates visibly – he can no longer walk more than a few yards at best. Most of the 42 participants have joined together to campaign for a repeated clinical trial which will be measured correctly.
Support John at: https://www.justgiving.com/fundraising/CrosswaysPitStop