THE death of MND campaigner Doddie Weir has motivated staff at his foundation to “push even harder” in their mission to find a cure for the condition, its director of research has said.
Former rugby star Weir – who clocked up 61 Scotland caps between 1990-2000 – set up the My Name’5 Doddie Foundation in 2017, shortly having been diagnosed the previous year. Since then it has committed a staggering £8 million to research, much of which has led to some encouraging discoveries.
But following Weir’s untimely death in November aged 52, the foundation’s team is now laser-focused on keeping his legacy alive and continue to strive to find a cure even in the absence of its colourful frontman.
“It was quite a shock when Doddie died,” director of research Jessica Lee said. “We knew his health had been declining but I don’t think we thought it was going to happen so soon. The way the community has responded has been amazing and for us, it’s just pushed us even harder to continue with our mission.”
Lee added: “The day after it happened, it was back to business as usual and we’re all just pushing even harder to honour his legacy.
We’re setting a new research strategy at the moment and are planning to launch a big new grant scheme to fund research.”
The research strategy launch, planned for the spring, will be the foundation’s flagship announcement, of 2023. It will see the charity work with the MND community to decide which areas of research should be prioritised over the next five years.
It will follow a recent long-awaited announcement by the UK Government that it will deliver on its pledge to allocate £50m to MND research – something charities had been campaigning for for a good 12 months.
A total of £29.5m of the funding is to be invested immediately into specialist research centres and partnerships with leading researchers. The other £20.5m will then be put towards accelerating work on the most promising treatments. Lee said once research priorities have been established, the foundation will develop a strategy on how they will bring them to life. She said: “Our vision is a world free of MND and what we wanted to do is set a research strategy that we create in partnership with the MND community – the patient community and healthcare community.
“We are currently going through a research prioritisation exercise which is where 97 people are taking part in surveys on what areas of research are most important to them. That will give us our priorities for the next five years.
“In parallel to that, we’re developing a strategy on how we’re going to bring those to life. That will be through our grant scheme and our policy and influencing activities such as the United to End MND campaign, but we’re also thinking about new approaches that will help us drive faster progress together through partnerships or other strategic initiatives.
“The aim is that in the spring we’ll be launching this strategy to the community and that will be our big statement to say ‘this is what we’re doing over the next five years and this is how we are going to reach our vision of a world free of MND’.”
The United to End MND campaign is a coalition of charities, patients and researchers which lobbied the UK Government to deliver on the £50m promise it made in 2021.
Lee said the foundation has been a big driver of the campaign and she considers the latest announcement to be one of the charity’s greatest achievements so far.
The foundation has also funded projects looking to identify new drugs which may be able to slow, stop or reverse MND progression, some of which are already showing signs of success.
MND – which progressively attacks the nerves that control movement – is currently incurable and the only drug available to patients simply delays death by two to three months.
Lee said: “We’ve supported projects that have identified new drug opportunities – so for example a project we have funded identified that a drug that’s already used for other conditions could be suitable for MND.
“We’ve then gone on to fund a clinical trial of that drug which is now recruiting patients in Oxford. We’ve also supported multiple clinical trials including MND-SMART which is the UK’s largest clinical trial for MND.
“Due in part to our funding, there are now more people than ever before in the UK that can access an MND trial, which is amazing and it changes that conversation for those who are diagnosed from ‘there’s little we can offer you’ to ‘we can offer you some hope’.”
Lee said the foundation has In a very short space of time managed to transform the MND research landscape. She added: “What people have said about us is we’ve come in as quite a new player and we’ve been a bit of a breath of fresh air.
“We’ve challenged the research community, people have said we have had a controlled sense of urgency and we’ve pushed people to think differently.
“In the last five years a huge amount has changed in the research landscape and I think we’ve had quite a big role in that.”
The loss of Weir – who was famous for his colourful tartan suits and wit – will no doubt have left a hole in the heart of the foundation and there are discussions ongoing about how the charity ensures its relevance and sustainability going forward.
But Lee insists the future is bright, with another round of Doddie Aid immediately on the horizon in January that Lee hopes will be the best yet. The month-long fundraising challenge sees people set themselves active challenges and work together to clock up the miles in famous Doddie tartan snoods while raising vital funds for MND.
The gaffer may be gone, but Lee says he will remain at the heart of everything the charity does until a cure is found.
She said: “It’s his legacy that we’re working towards, so he’s not going anywhere. Doddie always said that his greatest wish was that one day no-one would ever face what he had to ever again, and this is what the foundation is working towards achieving.”
