Fighting as a family for funding to defeat MND
Veterinary specialist Dr Lowri Davies is supporting her husband, Bob Gledhill, who was diagnosed with motor neurone disease (MND) in October 2020. Here, she explains more about the condition, the money they’ve raised as a family and why there is a lack of opportunity to take part in clinical trials in Wales
SUMMER 2021 ended on a high note for my husband Bob, our son Will and me. We handed over £70,000, our proceeds from Motoron Cymru, to the My Name’5 Doddie Foundation, which funds research into MND, and Skanda Vale Hospice – two causes close to our hearts.
We launched Motoron just months after Bob’s devastating diagnosis. This extreme sports challenge saw friends, family and supporters join us over one weekend in July to climb the Welsh Three Peaks, cycling between each peak. It was tough, but the camaraderie was brilliant and we were thrilled to smash our original fundraising target of £10,000.
In August, we cycled from Snowdon to Edinburgh – 330 miles over five days – to present the funds in person to My Name’5 Doddie, set up by former Scottish rugby international Doddie Weir.
Later in September, we cycled from Pen-y-Fan to Skanda Vale to present a cheque to the hospice – we have a longstanding association with this multi-faith community as I help care for their many animals, which include two Asian elephants.
MND affects the brain and spinal cord, so that muscles no longer work, and can affect walking, talking, eating, drinking and breathing.
At the end of the summer we were thrilled to hear that MND SMART trials – trials to test drugs already licensed for other diseases – would start in Wales in the autumn and that Bob would be called to take part.
This meant the world to us as a positive mental attitude in the face of this disease is critical and a key part of that, for Bob, is taking part in trials to hopefully help others down the line. However, to our dismay and frustration, these trials were delayed for numerous reasons. We understand they have at last started for some individuals, but as yet Bob doesn’t know whether he will be eligible to take part.
With MND, time is of the essence. The average survival time from diagnosis is two to five years, and any delay is a massive blow.
The UK Government has recently announced it will allocate £50m to fund research into MND, which is positive news. Some of those funds are due to come to Wales, but, unlike Scotland and England, we lack MND specialist centres here.
Yes, lab-based research is undertaken in Wales, but it is clinicalbased trials such as the SMART trials that will really help progress things.
As well as a lack of specialist centres, unlike patients in other parts of Wales, we can’t even get a referral to a specialist centre in England.
At times it feels as if we’re banging our heads against a brick wall. We have now arranged for Bob to be seen at a private neurorehabilitation centre in Bristol for intensive physiotherapy to hopefully help him stay active for as long as possible.
There’s a one in 300 risk of getting MND across a lifetime and MND affects up to 5,000 adults in the UK at any one time. In Wales, approximately 200 people currently live with MND – this terrible disease also affects patients’ family and friends.
Despite feeling as if we’re in limbo, Bob and I believe in living life to the full and we’re doing our best to remain positive and stay active. We’ve signed up to Doddie Aid 2022, a massparticipation event, encouraging us all to get active in January and raise funds to help find a cure for MND.
We’re also hoping to organise a fundraising challenge in France next year and are working with the MND Association to campaign for stronger provision for MND patients in Wales and those all-important trials.
As a family, we’re facing a big challenge, but to have the support of relatives, friends and colleagues means the world. We’re not walking this path alone, and that makes all the difference.