MNDF commits half-a-million pounds to support MND clinical trials across UK on Doddie’s 54th birthday

04 July 2024

My Name'5 Doddie Foundation has today announced it will invest more than £500,000 in clinical trials to help speed up the search for effective treatments and one day a cure for MND.

My Name’5 Doddie Foundation (MNDF), which was founded following Doddie's diagnosis in 2016 amid what he perceived to be a chronic lack of clinical trials, made the announcement on what would have been the father-of-three’s 54th birthday today (July 4). 

The funding will be allocated through MNDF’s Clinical Research Infrastructure Awards, part of the Foundation’s ambitious Catalysing a Cure research strategy launched last year, and will support multiple centres across the UK to deliver MND trials by funding the time of clinical staff. 

The Foundation has already invested more than £3 million in UK trial centres to help them recruit the staff they need to deliver MND clinical trials – including support for the delivery of MND-SMART and TRICALS studies. The Foundation also provided funding to enable MND trial delivery in Newcastle, leading to further recruitment to several national and local clinical trials. 

Dr Tim Williams, consultant neurologist at the Newcastle Hospitals NHS Foundation Trust, said: “The support we have received in Newcastle has been absolutely fundamental to a sea change in MND trial conduct and activity in Newcastle. It's been a great thing and I only hope such support continues and might reasonably be rolled out elsewhere. I think this is a highly effective and tangible use of funds.”

Jessica Lee, Director of Research at My Name’5 Doddie Foundation, said: “When Doddie was diagnosed in 2016, there were few MND clinical trials running in the UK. Since then, there has been significant progress and an increased investment into UK MND trials. It means today, the landscape is very different with there are many clinical trials running nationwide. 

“However, despite the increasing number of trials, not all centres are currently able to deliver them at pace due to a lack of specialised staff with dedicated time to spend on MND projects.

“Doddie was passionate about the need for more MND clinical trials, to give newly diagnosed people hope and purpose, and to accelerate the search for effective treatments. This commitment of an additional £500,000 to support individual trial centres, will enable them to buy-out the time of specialised staff to work on MND clinical trials, and make a real difference in our ongoing mission to end MND.” 

The announcement arrives as the public prepares to pull on their favourite tartan in memory of Weir on what would have been his birthday. The 61-cap Scotland and British and Irish Lions hero’s wife Kathy and two of his sons, Ben and Hamish, helped launch the initiative on social media this week. 

My Name’5 Doddie Foundation says ‘there are no rules’ on what tartan to wear, although participants are encouraged to sport Doddie’s famous yellow and blue colours on the day.

My Name’5 Doddie Foundation has so far committed more than £11m to MND research, with a further £2m invested in supporting people living with MND. 

The last 12 months have signalled a significant year of fundraising for the Foundation, with a further £6m committed to research by the end of 2024. 

Paul Thompson, Director of Fundraising at My Name’5 Doddie Foundation, said: “Today would’ve been Doddie’s 54th birthday, and there seems no more appropriate way to honour him than with a sea of tartan. We urge as many people as possible to join us today and beyond to raise awareness of MND, and remind us of the relentless need to pursue Doddie’s legacy, a world free of MND.”

In April this year, the Foundation marked one year since the launch of its bold research strategy Catalysing a Cure. The ambitious five-year blueprint set out how millions of pounds will continue to be invested into innovative research to find effective treatments and ultimately a cure, for a disease that affects around 5,000 people in the UK at any one time. 

Prizes will be available for the best tartan snaps, with a bottle of Doddie’5 Moonshine or Cap Classique sparkling wine, Doddie merch and a rugby ball up for grabs as part of the competition.

To enter the competition, please upload your image and use the hashtag #myname5doddie. Alternatively, post your pictures as comments on our Facebook and X (formerly Twitter) posts.