It is with great sadness we post Simon’s final update on this blog.
On the afternoon of Friday 22nd August 2025, Simon decided that this wretched disease had taken everything it would from him and, in a beautiful and serene spot in Switzerland, surrounded by his family, he wrested control of the fight away from his tormentor and ended it peacefully on his own terms.
His courage and strength in the face of the final unknown was an inspiration to us all. You will not be surprised to hear he was smiling, joking and spreading joy to the very end.
He left his own words of farewell and thanks, which we share below. He was incredibly grateful to everyone who contributed so generously to his fight: thank you all for taking the time to share in his story.
And now, over to Simon…
Well, nuts. I didn’t quite make 1,000 days.
By the time you read this, I will have passed into the next dimension, whatever that may be.
Or perhaps, knowing my luck, I was reincarnated as that slug in the cupboard under your kitchen sink. If it has a big nose and receding hairline, throw me a lettuce leaf, would you?
There are so many people I would like to thank. So many who helped me and my family over these tough two and a bit years. I want this post to be dedicated to them.
Thank you
My friends from my days working at BT, who spent all day climbing Welsh mountains to raise money for the MND Association, and who have supported me to the hilt.
My wonderful colleagues and Bjorn, my manager, at Nationwide, who have worked so hard for me and my family. You truly made a difference, thank you so much.
All my Work pals who became great friends from Lloyds in the UK and AMP in Australia. Not only did you make my life so much richer with your friendship, but you taught me so much as well. Particular shout out to Daniel T, one of the sharpest guys I have ever met, who believed in me and helped me build a career as my manager. Not a bad surfer, either…!
Marc, Jordan, Ed, Chris and Nick – my school Dads’ group. I barely got to know you before this shitty disease struck me, but you really turned up for me and I know Ria and our wee man will still have fun with you for many years to come. I take my hat off to Marc, he sat with me for hours to help me clear my head, whilst also recording a mini-podcast with me.
My wonderful university friends. These fantastic people who helped me find my feet in the world. They always made me laugh until I cried. If the meaning of life is to find great friends and experience joy, I couldn’t have asked for more out of these guys. A special thank you to Darren Burr, who ran the Brighton Marathon earlier this year, raising thousands for the MND Association.
My friends from school – we have been close for so long. Laughing and relentlessly teasing each other since the 80s! I am so lucky to have found you, our little Bracknell gang that went a long way. You made me the guy I am today (so it’s all your fault!).
My auntie Ro, always there for me with a kind message and a fun present for our son to play with. You always looked out for me – thank you.
Dyson, Jimmy and Pete. What do I even say? I lived with these three heroes for many years in London during my 20s, and we remained close ever since. Everyone else who meets them can’t help saying what a great bunch of guys they are. Because they are. I will miss you so much, fellas. And Dyson, thank you for being with me in my final few days. Even if we could barely get the words out through the emotion, it meant the world to me.
Andy. My oldest friend. Also with me at the end. We shaped each other through countless years. You will never meet a more gentle and thoughtful soul. I was insanely lucky to have met you, the luckier still that you decided to stick around with me. Thank you for being you, my friend.
Ria, my gorgeous, patient, loyal, sweet wife whom I will leave a widow. I’m so sorry. You never deserved this but boy, did we have some fun adventures together. Even though my life has been cut short, I would do it all over again if it meant being with you.
My wonderful family. Both of my parents, my brother and my sister. My happiest memories are growing up with you, those endless summer adventures, roast lunches on a Sunday afternoon, bike rides around the woods, Christmases together that made my heart sing. The unconditional love, support and affection you have given me since getting diagnosed has blown me away. I was so blessed to be born into this family. You have given me so much. Thank you from the bottom of my heart.
Finally, my little lad. Never have I loved someone so much. I did not think it was possible. I’m so proud of you – both Ria and I are. Every year with you has been better than the last. My greatest achievement in this life was helping to bring you into the world, and to see you grow up. There is nothing I will miss more than our silly games, our mad chats, the sheer excitement on your face as you show me a new trick you learned that day. You are the biggest part of me that will live on. I’m just so sorry that I couldn’t stay for longer.
And farewell.
If you would like to, please use the comments section at the bottom to leave your own messages of love and condolence – in a few weeks time we will take the messages and memorialise them in the blog.
RIP Simon – and love to your family. ♥️
Sue61 from MNDA forum xx
I knew you would have the strength to end it on your own terms. I hope your last moments were extremely peaceful. You have such a beautiful soul, I’ll remember your fun personality and your smile most. I’ll remember you til my last day and we’ll speak about you all the time. ❤️
Oh Simon. What a remarkable person you are. I am in awe of the courage with which you faced this cruel disease and the extraordinary bravery you showed to end it on your terms – thus ultimately protecting and saving your family from the horror of seeing it take every last piece of you. You were and remain an inspiration.
Dear Ria, my heartfelt condolences to you and your son. Though we’ve never met, if there is anything I can do for you from Belfast, please do not hesitate to reach out.
I joined LloydsTSB with Simon in 2004. He was kind, smart & very, very funny. Genuinely one of the good guys. His courage through these last few years has been an inspiration and though I’m sure you’re mourning right now, you must also be so, so proud.
God bless you now & in the coming days ahead.
Barry
I’m so incredibly sorry to hear about Simon. He was truly one of the kindest and most genuine people I’ve ever known — always ready with a smile and a helping hand. I’ll never forget our chats in the BT office . It’s such a heartbreaking loss for all of us.
My thoughts are with you, Ria, and the whole family during this difficult time.
Sending warm hugs and lots and lots of love,
Aysha
We only met you and your lovely wife and son once but we will never forget you all. You lived well and that legacy must live on. With our love Mike and Sue Stevenson x
It’s such a cliche but the world really has lost a true, sparkly gem who left sparkles on many people’s lives, including my own. Thank you Simon for contributing to many fun times at Lloyds and in Highgate. My thoughts are with your family and friends at this desperately sad time. But how proud they will be of you. Sending love, Heather x
The world has lost another bright light. Our paths only crossed for a few years Simon, but you always left a smile on mine and everyone’s face. I’m so so sorry to hear you’re no longer with us, but glad you left on your own terms. Sincere condolences to your family and friends. PS – I’ll now be checking every slug in my allotment for any likeness and probably being just that little bit kinder than I otherwise would have been!!
I can’t match your writings. So funny, brave and thoughtful. I appreciate the time we had and you are an inspiration to live life and face adversity with bravery and humour. I hired you at BT and tried to hire you again but you made the right choice to go to Nationwide 🙂. A brilliant professional but moreover a great bloke. You inspire. RIP Simon. And f*** y** MND.
Jon C.
Vale Simon, into the infinite – my condolences to his family and friends for your loss – may your shared loved live on.
You were such a special person Tink. My life was richer for knowing you.
Di Finch..Beths Mumxx😘
Simon, I don’t have the words. All I can do is echo the comments on your spark, the condolences to your family, and the reflections on your incredible bravery and inspiration, right up to the last. Rest in peace, and whatever you come back as or wherever you’ve gone, it’ll be better for you being there.
My sincerest and most heartfelt condolences for all of Simon’s family and friends.
I feel lucky to have met and been friends with such an inspiring guy . So genuine and warm and always with a big smile.
And a superb professional who was a pleasure to work with at BT.
He clearly touched many people’s lives for the better, and I am so grateful for that.
Tim
It’s heartbreaking to lose someone so full of life. He was always upbeat, always smiling—a truly positive force in every room, and although we had lost touch I will always remember his energy and kindness when we were at Lloyds.
Ria and his family, my deepest condolences, you must be incredibly proud of him over this terrible time. I’m sure will take comfort on how he is admired by all and his legacy will live on.
Rest in peace, my friend.
So so sorry to read this. Simon was a joy to have known briefly on our grad scheme. He was a very special person and brought happiness to everyone he met. Thinking of you Ria and your wonderful son, who will I’m sure bring joy and happiness to everyone he meets as he grows. Much love, Ange xx
Am I strong enough to speak aloud
of pain, of anguish, of the freezing cloud
surrounding us, as we lament his loss? So loved, adored.
Good friend to all. Bright spirit crowned with virtues few afford.
Can heaven yet deserve his gain?
The old, there’s little time for us to heal our pain,
the young, a much more hopeful stance can frame.
But for all here now suffering, torn, forlorn,
let us promise him this and on his next journey send:
Grieve steeply. Then, when done,
remember him, remember truest friend,
but most of all remember joy and fun.
Ria and your darling son, I adored your husband and dad – he was such a good friend and positive influence in my life. We played music together and after our jamming sessions, the endorphins lifted me so high, it made me thankful for life and the joy of music. I will never forget him, or the both of you. Thank you for being so open. All I want to do is give you both a massive hug and I hope, one day I will xxx
Simon & Ria,
Anna and I will always be so grateful you took us in as housemates in Manly and have such fantastic and happy memories of the times we spent together in Sydney.
I’m so sorry this has happened.
Wish you and your family all the love and support, we’re always here for you if you’re ever in Wales.
All our love, Steve, Anna, Miles, Otis, Felix x
RIP Simon. You energy will never leave. It only changes form. Peace and comfort to Ria and your son. With affection, Kim MND forum
We never met, Simon – but I never stopped thinking of you so deeply, all the way through.
With love, Sue
I will miss you. Rest in peace, my dear.
Goodbye Simon
You are an inspiration to us all
One day when my time is coming I will try to tap into my inner-Tinckler and remain abundant until the end.
It sounds like your family will be engulfed in love in your absence, but your guidance will never die.
Lots of love
Will
I was thinking of you all the time – so sad.
Susan
To all of Simons family and friends how lucky were you to have him in your life.
We on the forum only had his company for such a short time but he packed so much in.
Always willing to share his experiences with others embarking on their own journeys.
His wicked sense of humour brightened the day for many.
He will be missed but the legacy of his posts will remain for those that will sadly join the forum in the future.
RIP Simon
Bowler.
Dear Simon,
I did not have the privilege of meeting you, for that I am so very sorry.
Your Auntie Ro is a dear friend – I learned of you through her.
Rest in peace dear Simon, my thoughts and prayers are with you, and with your family.
Sue
What a wonderful message from Simon who was a fabulous and funny guy. I and sure we will all hold Simon in our hearts and think about him often.
Ria, should you want a break from the English winter please come and stay with us in Sydney. You will always be welcome…
Your and Simon’s friend…Daniel
Tink you were such a beautiful soul inside and out . You will be very much missed by us all . Thinking of you all and sending love and condolences to your family and friends xx
Wow, I saw you had a new blog post and ‘bang’ in a few lines I realised you are gone.
F**k you MND!
Dear Simon & Ria,
I only met you both once in June this year at an MND event & was impressed at what a loving and supportive couple you were.
Simon & I both realised that we followed each others blogs and we exchanged an email or two after that.
Ria, I am sending thoughts & love to you and your son. Simon was a force to be reckoned with & on reflection his choice to be in charge of how his life ended is a testament to that.
I will never forget Simons humour in his blogs that I often laughed out loud over.
RIP Simon and hopefully over time Ria you will also find peace.
I am deeply saddened to hear that Simon has passed, so very sad. My heartfelt condolonces to you all.
It has been a privilege and an honour to call you my friend. Over the 40 years since we first met, you have always shown great kindness and care to everyone fortunate enough to know you. Thank you for the wonderful memories — from endless games of football and video games as kids, to snowboarding and more video games as adults. The weekends we shared with Paul and Dyson in recent years will stay with me forever; I have never laughed so much or had so much fun.
You have been a true hero and inspiration over these last few years. The courage you showed in sharing your story, helping to shine a light on such a cruel disease and supporting others is a testament to the man you are.
To Ria, your son, and your family: I have no words to express my sorrow at your loss. Please know I am holding you in my heart and sending all my love and strength during this difficult time.
Chris
Simon, our fiercely intelligent, kind and outrageously funny friend. You had a knack for making people feel special and always made sure everyone was included. Your quick wit, generous good humour and astounding bravery were a force for good. You enriched all our lives and we will miss you.
Sending so much love and strength to Ria, your lovely boy and all your family. I hope it gives them comfort to see how cherished you were by others, as well as by all of them.
Rest in peace,
Ceri & Jeremy xxxx
I’m so sad to hear about your passing. Whenever I met you were always so lovely, friendly and positive and the world is definitely a poorer place without you in it. It feels so desperately unfair and my thoughts are with Ria, your son and the rest of your family. I can’t even comprehend the grief and loss they are feeling right now. Xxxx
I met Simon when he was 18, working together for a few short months. He was the sort of person that leaves an impression for a lifetime. He was so funny and clever, a sparkling presence in the room. He brightened every day that I worked with him. I remember how much he loved his family, and how much he adored Ria. What you are all going through right now is unfathomable to me. If the value of a life is measured not in years, but in the impact it has on others, Simon’s was gold. I hope knowing this somehow helps.
To my wonderful friend Simon;
I am so thankful to have met you. I was heartbroken when I received your message that you were in Switzerland. But, you know I respected and understood your decision. We talked a lot about living with this horrible disease.
We were thrilled when someone connected us because we were doing the the same clinical trial – QRL-201 – you in London – me in Toronto. We FaceTimed about our medical experiences, physical challenges, life in Canada and the UK, history and philosophy, children and family, careers, travel…I will miss our chats tremendously. Your knowledge of what was happening in the MND/ALS field was so helpful, and I learned a lot from you. We laughed a lot, too. Though we met under the worst circumstance, I know we would have been friends if our paths had crossed differently. When I suggested you try the best Canadian whiskey, by our next call you were raising a glass of Crown Royal that you ordered on Amazon and raised a glass to us meeting wherever lies beyond.
I wish you rest and peace, Simon. I will always remember you. My thoughts are with Ria, your beautiful boy, and all your family.
Your friend, Colleen