My Name’5 Doddie Foundation has raised £1m in just a year. Gareth Jones talks to trustee Jill Douglas about the challenges of setting up a charity.
Doddie Weir is a man who brought joy throughout his career to fans of Scottish rugby. The 6’ 6” lock played for his country 61 times, becoming a fan favourite for his uncompromising style and passion for wearing the dark blue jersey.
However the former British Lions player has never received a more emotional reaction at Murrayfield than he did on 18 November last year.
Only a matter of months after publicly announcing that he is battling motor neurone disease (MND), Doddie took to the field with his sons Angus, Hamish and Ben to present the match ball for the Scotland versus New Zealand game – and also to unveil his new charity, My Name’5 Doddie Foundation.
Since being diagnosed with the degenerative condition, the 48-year-old has dedicated his daily life to campaigning for greater research into MND and providing support to others battling the disease.
One year on, and My Name’5 Doddie has captured the attention of those in Scotland and further afield – raising £1 million and counting to help the fight against MND.
But how has the new charity managed to raise so much money and gain worldwide publicity in a short period of time?
“Work began very quickly after Doddie’s diagnosis,” said Jill Douglas, one of the charity’s founding trustees and a presenter for BBC Scotland.
“I think once he had started to process his diagnosis, and he still is processing it I think, he shared it with a few close friends. We thought that Doddie and his family were going to need a bit of help over the next few years. At the same time, his first thought was dedicated to other people with MND, and how he could help them. Doddie was the real driving force for the charity straight away.”
The challenge facing Jill and the others involved in forming the charity was understanding the formal process of becoming a registered charity, while getting the organisation set up quickly – so Doddie, who was eager to champion its cause, could get to work.
The group met a lawyer, who advised them of the legal requirements needed to set up a foundation, and also began using their expertise to create a brand and get an online presence ready for the charity.
“We realised that to become a charity we would need to go to OSCR,” said Jill. “Doddie is one of these people who wants everything done immediately. We were very fortunate though that it did not take us as long as it could have, and we received a lot of support from the charity regulator.”
Doddie went public with his diagnosis in June of last year, and the newly formed board of the charity – which also includes former rugby internationals Finlay Calder and MND Scotland patron Scott Hastings – used their expertise and sought external support to ensure that the charity could be unveiled in time for the start of the rugby autumn internationals series.
The board and Doddie met with those who were battling MND, plus medical experts, to try and establish how the organisation could best support the fight against the condition. The foundation’s board decided that investing in research into MND treatments – which many people they spoke to considered to be outdated – should be the focus of its fundraising.
Since then, a total of £1m has been collected for MND research and to support those with the condition. Investments have included £250,000 to help researchers at the University of Edinburgh to test the use of existing medicines on MND, and £400,000 to support the work of Chris Shaw, professor of neurology and neurogenetics at King’s College London who is spearheading gene therapy for sporadic Motor Neurone Disease. The foundation has also donated £100,000 to both MND Scotland and the MND Association, which will be used to directly support those with the condition.
As well as receiving overwhelming support from the world of rugby, the charity has also gained the attention of the wider public – with community bake sales, climbing challenges and even farming auctions helping to benefit its work.
Jill stressed the charity has a duty to those who have donated or fundraised to do all it can with the money, and to be transparent with where funds are going.
But the work does not stop here, with both Doddie and his supporters determined to keep the momentum going.
“Doddie’s energy is endless,” said Jill. “Even though he is suffering from a debilitating disease, he is out there every day campaigning and he is what drives the rest of us forward.
“We are delighted to have amassed £1m over the first year to invest in research and helping those with MND. It’s far more than we ever expected.
“But now we have ambitions to do exactly the same next year, if not more.”
