"This can't be a flash in the pan": Why our community matters more than ever. From Paul Thompson, our Director of Fundraising and Engagement

Everyone who met Doddie Weir, remembers exactly where they were and exactly how he made them feel. The love that people still have for him is one of the reasons we’ve been able to build such a strong community since he set up My Name’5 Doddie Foundation in 2017. Nine years on we’re continuing to make sure that fundraising community keeps growing so we can back the incredible research that scientists have in the pipeline.

Doddie really cared about people and it was obvious in everything he did. From his time as a player through to his post-rugby career, he made people feel part of something. We want everyone who comes across the Foundation to feel like that. Since we were set up we’ve been able to commit over £24 million to MND research and a further £2 million to support people living with the disease. None of this would be remotely possible without the community you have helped us create. Every charity values their supporters, but Doddie wanted to make sure you had a laugh while you were doing it.

There is no disguising the fact that motor neuron disease is one of the most brutal diagnoses that anyone can be given. This was true for Doddie and it is true of the well over 20,000 people in the UK who have received the same news since. The vast majority are not famous and don’t have the opportunity to do what Doddie did. But he frequently talked about how he wanted to bring people together and represent every family touched by the disease. It is this approach that is at the heart of how we do our fundraising.

We’re lucky enough that people support the Foundation in a whole range of ways, from running marathons and by direct debit to leaving us a gift in their will. Every day in the fundraising team people contact us wanting to support the charity in their own unique ways, from the simple to the borderline crazy. Our job is to help them make as much money as they can and above all, to make sure they enjoy doing it.

We take the responsibility of representing Doddie’s name extremely seriously. This means aiming to carry out everything we do to the highest possible standards. In fundraising, just as in our research, we want to keep up the relentless, demanding urgency that Doddie showed and that people living with MND deserve.

We sometimes hear people say that MND has the greatest community in the world that no one wants to be a part of and this is exactly how we see it. As fundraisers, we are extremely privileged to be allowed into people’s lives when they have experienced MND in their family, but it is also a privilege to be able to meet so many inspirational and exciting people going about their fundraising in the spirit of Doddie.

People like Stephen Molloy who broke the world record for running a marathon in full highland dress. People like Beth Sweeney who brings dozens of vet practices together every year to get people and their pets behind Doddie Aid. And people like Davy Żyw, who was the first ever person to take part in the Winter Paralympics while living with MND when he qualified for Team GB in Snowboard Cross at Milan Cortina this year.

Over the past six months, we have seen exactly the same response to Lewis Moody, following his diagnosis late last year. Doddie and Lewis have a lot in common, aside from the obvious quality of being world-class rugby players. They are both brave, funny and relentlessly determined people. But above all, the biggest similarity is in how they value people. Lewis and his family are dealing with a horrific reality after his diagnosis, just like everyone who faces MND, but they are doing it with the grit, determination and humour of Doddie. The way people are inspired to get involved is incredible, and this will only grow.

Motor neuron disease does not have a fundamental right to be as high profile in the UK as it has been over the last nine years, but it is absolutely essential that it maintains this visibility if we are to keep making progress against the disease. The reality of MND is that people like Doddie and Rob Burrow are no longer with us, which makes it all the more important that our community keeps growing and keeps banging the drum.

There is no quick fix. In fundraising, we have achieved some incredible things together, but this can’t be a flash in the pan. Researchers tell us there are genuine reasons to be hopeful for progress, but we need to stick together to make sure we keep up the momentum that is needed to get there. The only way this can keep going is with all of you (and ideally everyone you know!) on the same team.