Stand Against MND have announced that founder and Motor Neurone Disease (MND) warrior Sam Perkins has passed away.
The keen triathlete was diagnosed with respiratory onset MND at the age of 37 in 2019. As he deteriorated he was restricted to a wheelchair and required the use of a ventilator.
However, his determination and courage led him to set up the Stand Against MND charity in an effort to raise awareness and funding to combat the dreadful disease and he helped raise more than £320,000 for his charity.
Then, in 2023, Sam set up the Fifty50 campaign in an attempt to recruit 50 fundraisers to raise at least £500 each – the name represents the 50-50 chance of dying in the first two years after diagnosis.
“I love and miss you my friend”
There were poignant messages from across the sporting spectrum, with four-time IRONMAN World Champion Chrissie Wellington and triathlon journalist Tim Heming – both avid campaigners and friends of Perkins – leading the tributes to the great man.
[Photo credit: Tim Heming]
Wellington penned a beautiful tribute to Sam which you can read in full here. She added: “It’s without hyperbole to say that Sam was, and is, utterly inspirational.
“He was courageous, brave, tenacious and so incredibly funny. He was warm-hearted, generous, kind, caring and thoughtful, as well as being ambitious, driven and utterly determined to rinse every last drop out of his time on earth.”
MND has finally taken the life of my brave, funny, kind, generous, courageous, inspirational friend, Sam Perkins.
It was an honour and privilege to be part of Sam’s journey – and his memory and fight lives on in all of us.
I love and miss you my friend.@StandAgainstMND pic.twitter.com/jZ2tyO6cfF
— Chrissie Wellington (@chrissiesmiles) February 9, 2025
Heartfelt tribute
Speaking to Tri247, Tim Heming recalled his first meeting with Sam and the friendship that followed.
“I first met Sam in 2019, a few months after his diagnosis,” Tim explained. “As a mainstay of his many fundraising plans for his newly-founded charity Stand Against MND, he wanted to take part in one more triathlon.
“Sam’s dad Alan was there and I interviewed them both. I still have the transcript, including Sam ribbing his dad over preferential treatment by the nurses at the hospice, but that afternoon Sam also outlined his grand plans for a triathlon that would involve just everyone who’d helped him from his introduction to swim, bike and run – initially as a health-kick – a decade prior. I remember the list seemed to run to half of the East Midlands.
“Then the pandemic came along and all events were off, and given the life expectancy post-diagnosis for people with MND, it looked to signal the end of Sam’s grand plan. My mistake. Over the five years that followed I learnt never to underestimate the fortitude of the man again.
“Strength of spirit”
“He eventually got the Outlaw done in 2022, pushed around by a continually-revolving team at Holme Pierrepont in Nottingham in his specially adapted chariot. He loved the attention. At the end there were many tears, for many reasons.
“Three marathons followed, including London, where he’d been granted one of a handful of assisted wheelchair spots, twice – once dramatically curtailed by a buckled wheel – and he raised hundreds of thousands of pounds for his charity.
Sam Perkins said farewell last night
This is a short recap from 2023 when a buckled wheel kiboshed the London marathon attempt
Sam returned and completed the event last year, raising yet more thousands for MND research
He is the best of us. RIP mate https://t.co/VIz3gbqOHq
— Tim Heming (@Timheming) February 9, 2025
“As bit by bit his body ceased to work, he just kept going: more ideas, more project management, more mitigating the ever increasing risks.
“The triathlon analogy of being able to endure is obvious, and he was a master at that, but moreover he also enriched, adding something to the lives of everyone in the communities he touched.
“When I saw him for the final time at the start of the year, he knew the end wasn’t far away, but that strength of spirit shone through even more. I was privileged to sit by his bed and we watched his beloved Nottingham Forest on the TV in the FA Cup third round. Alan was there again. He always was.”
We are truly heartbroken to learn of the passing of Sam Perkins.
An inspiration to everyone who knew him, Sam founded @StandAgainstMND and never let his condition stop him from raising awareness and conquering huge challenges.
Sam’s legacy will never be forgotten and he will be… pic.twitter.com/1u5OpaRUAA
— Nottingham Forest (@NFFC) February 9, 2025
The Fifty50 campaign by Stand Against MND remains active, and you can donate on the campaign’s Just Giving page.
