A Carmarthenshire family is hoping to raise £10,000 to fund clinical research into Motor Neurone Disease (MND).
Bob Gledhill, 52, his wife, Dr Lowri Davies, and son, Will, 16, have pledged to raise the money just months after Bob was diagnosed with the life-shortening illness.
The family, who live in Rhyd-ar-gaeau near Carmarthen, have launched the ‘Motoron Cymru‘ challenge, which will see them take on the Welsh Three Peaks, cycling between each peak, over the weekend of 2-4 July 2021.
Money raised from the challenge will go towards the ‘My Name’5 Doddie Foundation’, set up by former Scottish rugby international, Doddie Weir, to fund research into cures for MND, with a particular focus on clinical trials. Part of the funds raised will also support the hospice run by the multi-faith community at Skanda Vale, near Llandysul.
Raising awareness of MND along with the need for improved access to specialist care and more wide-ranging support for MND sufferers in West Wales is also a priority.
Bob received the devastating MND diagnosis in early October 2020. MND affects the neurones in the brain and spinal cord that control the muscles. This leads to muscle weakness and can affect walking, talking, eating, drinking and breathing. The course of the disease is hard to predict and each individual is affected differently – the average survival time from diagnosis is 2-5 years.
While MND patients in other parts of Wales are automatically referred to specialist units in England, this isn’t the case in West Wales, and following diagnosis, Bob experienced delays in accessing the local neurology service. The family were also frustrated at the lack of specialist information and opportunities to take part in clinical trials in Wales.
Bob explains: “Following the trauma of the diagnosis, I felt abandoned by local services – what I really needed was a prompt referral to a specialist MND centre. It was also difficult to get hold of detailed information about the disease and how best to manage it. We had to undertake our own research into supportive therapies such as nutrition and exercise, drug therapy and access to clinical trials.
“We contacted the Oxford MND Care and Research Centre ourselves and found them extremely supportive, however I’m still waiting for a formal referral to the centre. Coping with the diagnosis would have been easier had we had immediate access to such a centre.
“Despite this terrible diagnosis, as a family we are determined to live each day to the full. I want to stay active for as long as possible and I really hope to be able to take part in a clinical trial. To be able to contribute to MND research and make a difference for others, in the future – this is hugely important to me.”
Bob is in training for the Motoron Cymru challenge and has already walked and cycled hundreds of kilometres as part of his preparation. Bob adds: “Staying upbeat is extremely important in coping with this awful disease, and for us as a family, the Motoron Cymru challenge is giving us a practical focus. Family, friends and colleagues will be joining me on this challenge and their support at this time is keeping us going. Positivity also means being part of a larger community trying to find a treatment for MND.”
An outdoor enthusiast, Bob is originally from Huddersfield. He met wife, Lowri, in Peru in 1994, where he was working as an expedition leader and Lowri was visiting on a gap year. The pair travelled extensively, before settling in their smallholding in Rhyd-ar-gaeau, from where Bob helps Lowri run the SMART Specialist Veterinary Referrals Clinic, which has won international acclaim.
The family has a long-standing association with Skanda Vale, as Lowri cares for the centre’s many animals, which include an orphan elephant donated by the King of Sri Lanka.
Bob adds: “I’m determined to keep on going and to fight for greater support for MND patients in West Wales, raising awareness of this cruel disease and helping find a cure. I want to help others down the line and avoid more sufferers being placed in my situation.”
