In memory of Sam: the Stand Against MND will never end

“I will live the most significant life I can muster.” 

Those were the words of my friend, the inspirational Sam Perkins – whose life was finally taken yesterday by Motor Neurone Disease (MND).

Sam was diagnosed with this cruel, devastating disease in 2019, aged just 37. Whilst never shying away from the physical and psychological torment inflicted by that diagnosis, he vowed to live his life to the absolute fullest; relentless in spreading joy, love and positivity, and dedicating himself to raising awareness and funds so that one day a cure will be found.  

“What am I going to do? Be sad and bitter about the undoubtedly cruel hand life had dealt me? Or to take the most possible from whatever time I have left?”

I am so proud to be a patron of Sam’s charity, Stand Against MND, but even prouder to have been his friend.

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.

As a former professional athlete, I am asked a lot about high performance. In other words, what does it take to be a champion or to live your personal best life? To me, Sam epitomises this better than anyone else I have ever met.

He lived anchored by a passion and purpose - a ‘why’ that lit up his path. He stepped out of his comfort zone, setting crazy new and challenging goals that left his friends and family shaking their head in disbelief. Take the TCS London Marathon in 2023. By then Sam couldn’t breathe, move or eat unaided. Yet, he was able to convince people that, even though something might seem overwhelming or impossible, that it didn’t mean it wasn’t worth attempting.

“I don't do small ambitions, and I set my expectations as high as I can see.”

He was a fantastic leader, who was able to bring people together - unifying them through a shared purpose and goal. As an experienced project manager, he created plans (so many plans – spreadsheets upon spreadsheets of plans!). But when things went wrong, and his marathon dream was shattered due to a flat tyre and buckled wheel (a scenario not accounted for in the many plans!), that’s when Sam really came into his own.

Success isn’t when we never fail. It is when we use the failure to learn and uplift us. Sam knew how to fail upwards. Fuelled by the disappointment of not being able to cross the finish line of the London Marathon, he vowed to complete the inaugural Rob Burrow Leeds Marathon and then return to London a year later.

“If I commit to doing something, you better believe I will do everything to make sure it happens.”

And return we did. Even though Sam’s health had deteriorated to the point where was being fed through a peg in his stomach and could hardly speak, it was the epitome of high performance. The ambitious, bonkers goal, the even-more-meticulous, no stone unturned ( = spare wheels, puncture repair kits, on call mechanics) plan, the crazily committed and tight-knit team, the willingness to accept the possibility of failure, the overcoming of pain, discomfort and adversity, the ability to bounce back, the unbridled passion and the resolute and unwavering purpose: to make a Stand for MND.  A stand which has raised over £250,000 to date.

To me, that’s what it means to live your personal best life.

I was so honoured to be part of the team that pushed Sam across the TCS London Marathon finish line, and be able to realise his childhood dream.

I am so honoured to have been his friend and to have shared in his journey.

A journey that was cut all too short by a disease which, as yet, has no cure.

“I chose to try and squeeze every last drop of life from the time available to me.”

My hope is that, in Sam’s memory, we all try to be a little bit more like him and 'live the most significant life we can muster'

I love and miss you my dear friend. You changed the way I see the world. You are an inspiration.

“I remember I am alive. I have opportunity. I love. I laugh, I strive, I experience.”