Clinical trials into motor neurone disease (MND) have received a £500,000 boost from a charity founded by late rugby legend Doddie Weir on what would have been his 54th birthday.
Weir, who made 61 appearances for Scotland, was diagnosed with the terminal condition in 2016 and set up the My Name’5 Doddie Foundation to boost research into the disease.
The father-of-three died from MND in November 2022, aged 52.
The foundation announced on Thursday that the £500,000 will support sites across the UK to deliver MND trials by funding the time of clinical staff.
The trials aim to speed up the search for effective treatments in a bid to find a cure for the devastating condition, which affects around 5,000 people in the UK.
The foundation has already invested more than £3 million in trial centres to help recruit staff for the work, and to support the delivery of trials.
It has so far committed more than £11 million for MND research overall, with a further £2 million invested in supporting MND patients. A further £6 million has been committed to research by the end of this year.
News of the latest funding boost comes on what was Weir’s birthday, with fans encouraged to mark the occasion by wearing tartan as a tribute to him.
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 in MND trials.
“Today, the landscape is very different – 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.”
Dr Tim Williams, consultant neurologist at the Newcastle Hospitals NHS Foundation Trust, where a clinical trial is run, said: “The support we have received 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.”
Paul Thompson, director of fundraising at the 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.”
