Doddie Weir, the former Scotland and British and Irish Lions rugby union player who died over the weekend from motor neurone disease, leaves “a lasting legacy” and will, admirers said, be remembered as a man who helped transform people’s understanding of the disease.
Weir’s death aged 52 was announced by his family on Saturday. His wife, Kathy, said he was “an inspirational force of nature”.
Princess Anne, the royal patron of MND Scotland, was among those paying tribute. She said: “What a sad day. Doddie Weir will be greatly missed. He was truly larger than life, determined, generous and humble. He transformed people’s understanding of MND and funding for research.”
Weir’s friend Jill Douglas, the broadcaster and chief executive of the My Name’5 Doddie Foundation, said Weir was someone who always wanted joy, fun and hope to be at the centre of charity’s activities.
“He felt his diagnosis meant there was very little hope and people given his diagnosis were left without hope,” she said. “He felt that was inexcusable.
“He was determined to make a difference and he wanted to shine a light on the fact there was not enough being done for people who are given this diagnosis. His legacy will be to continue to make a difference.”
Weir was part of the successful campaign to get the UK government to invest £50m in targeted MND research.
Douglas said that investment was important. “If you talk to the research community, they believe they are on the cusp of significant breakthroughs. Ten years ago, if you’d asked that same question, you would have had a very different answer.
“People who are at the forefront of this research believe it is within touching distance.”
Weir revealed his MND diagnosis in June 2017. Douglas stressed that it was important to say that MND did not define his life, to remember the importance of family, rugby and farming. “It was the last part of his life and the rest of his life was rich and well lived,” she said.
“But he knew he had an impact. He was impatient for change. He never took the foot off the throttle, he was constantly challenging and pushing and questioning and inspiring … We have a responsibility to take that forward.”
Those sentiments were echoed by MND Scotland, which said Weir’s “tireless efforts to create change will leave a lasting legacy”.
Rachel Maitland, the chief executive of MND Scotland, said: “Doddie Weir was a huge inspiration who will be missed by so many. His bravery in sharing his experience of living with MND helped raise vital awareness across the country and beyond.”
Weir was a part of the United to End MND campaign that led to the government pledge.
Maitland said: “The success of this campaign brings new hope of finding meaningful treatments and a cure sooner. MND does not wait for anyone and now we have another person taken too soon because of this cruel disease.”
Rob Burrow, the former Leeds Rhinos rugby league player who has MND, said Weir was his hero and the money was needed urgently.
He tweeted: “I’m sorry to say, how many more warriors die before this stupid government give the 50m they said they would give. I’m absolutely gutted to see my friendly giraffe die. You are the reason for being so positive RIP.”
Weir was seen recently at Murrayfield, supporting the challenge that former Leeds and England captain Kevin Sinfield set himself to run seven ultramarathons in seven days.
Sinfield said: “I know, on behalf of the whole Ultra 7 in 7 team, it was our ultimate honour that Doddie was at Murrayfield just two weeks ago when we set off on our fundraising challenge.
“With his trademark smile, he insisted that he wanted to be there with his new pink trainers on.”
Sinfield said Weir’s spirit would live on “in all of us knew him. He will always be a champion.”
Tributes were also made to Weir by the prime minister, Rishi Sunak, and the Prince and Princess of Wales.