Action Duchenne exists to support, empower and equip every DMD community in their journey from diagnosis and beyond.
We support our London Marathon runners much like we do the Duchenne community. We are with you on your whole journey, from registering to the big day and beyond. Running the London Marathon for Action Duchenne is an experience you will never forget. You will get to experience the charity from the very heart, having contact with our Fundraising, Support and Science teams to keep you boosted along the way.

I just want to say that Victoria and the rest of the Action Duchenne family are incredible human beings. The support they give is amazing. When you run for them, you’re not just a number or a fundraising target, you genuinely feel like you’re making a difference. You see what your fundraising helps achieve, how it supports families, and how it helps the boys living with Duchenne. I think we did them proud ~ Leanne, 2026
We can’t wait to welcome our team of runners for Sunday 25th April 2027!
Applications close on 10th July.
Ben’s London Marathon Story 2026

Wow, what an experience the London Marathon was. It exceeded all my expectations in terms of friendliness and support. I will have amazing memories that will stay with me forever. I’m still buzzing a few days later as I write this. I don’t want to come off cloud 9.
I have to start by saying I owe so much to my wonderful wife Claire, for her incredible support before, during and after the Marathon. For putting up with my madness, my ups and downs and coming to every half marathon with Harry despite the weather.
I was incredibly lucky to be part of the brilliant team of Louise, Leanne, and of course Victoria. Training through the darkest, bleakest weather would have been so much harder without them. We were united by Duchenne and the shared mission of reaching that finish line. I couldn’t have asked for a better team—I was truly fortunate to have them. The emotions when we met at the finish are impossible to put into words.
As for the marathon itself, for me it started with a Tube ride into London. I was sitting there in my full parrot costume, and no one batted an eyelid—yup, this is London. Amazing. This all changed as I approached Charing Cross station. Firstly, I was asked by a lady from BBC Radio London for an interview. I should have been better prepared—it was all very surreal. Then I boarded a very busy train and chatted to fellow runners, so many of whom were running for charities. It really is such an incredible fundraising event, and everyone has their own story.
At Blackheath, we all alighted and the throng of runners made their way to their respective start areas. I spent some time marvelling at the wheelchair athletes warming up—wow, they’re quick. I then noticed the hot air balloons and went to take a closer look. It was a very calm and, alas, clear-skied morning. I sensed the heat was on its way. No backing out now—it was going to be full parrot costume to the finish.
I thought a good way to get some publicity for Action Duchenne was to enter for a Guinness World Record as the fastest bird. It got me some news articles and radio interviews back home, so nothing lost there. I had the challenge of 4:15 to beat, which I’ve done before many, many years ago—but not in a costume. Just so you know, this 55-year-old fool in a felt hat and costume didn’t threaten that record! The heat got the better of me. It was pretty cool to be part of the brigade of others in costumes attempting records, many of them succeeding. The amount of money some of them have raised over the years is staggering.
I spent the next hour or so trying to find a spot of grass in the shade to sit on and, of course, taking part in the obligatory giant queue for the loo. I had a wander around, and many folks from far-flung corners of the globe wanted selfies with me—how flattering. I witnessed the first wave start. Oh no, this was getting real. I was wave 8; things were very jovial and good-natured in our pen. Before I knew it, we were off. I kept telling myself, “Go slow, go slow.” It’s downhill to start, and the advice was to pace yourself.
The crowds en route to begin with were fairly sparse. The kids among them loved the outfit—I high-winged them and blew my airhorn. Great fun.
Then we met up with another wave from a different start line—so many runners, utterly amazing. I had no choice but to go with the flow and whatever pace we were doing. The crowds were building, many people deep in places—music, horns—and it seemed everyone was shouting my name or “Go on, parrot!” Oh, my emotions—my first welling up, with many more to come. The further we went, the more people were shouting. We met yet another wave of runners—I really can’t describe it. Absolutely incredible. Beyond what I had ever expected.
I passed Daddy Pig—he looked hot already. Maybe that was a clue of what was to come. The Cutty Sark was next and my absolute highlight. The course narrowed, we were packed in, and there were so many supporters. The noise was incredible. Again, the support—not only from spectators but also from runners—was amazing. They knew a fool when they saw one. I had chats with people who knew of Duchenne and also one runner who had a 24-year-old son. I wasn’t expecting to bond with people in this way out on the course.
Tower Bridge was just before halfway. I was there in about two hours, so well on course—but things were getting hot, and my body was telling me it wasn’t enjoying this so much. I’d done a fair few half marathons in the outfit, but not in these temperatures, and the runs of 20+ miles in normal kit during training had been fine. I also started noticing more and more people in a bad way being treated. It was then that the decision was made: ease back, be sensible, and really start having fun winding the supporters up into a frenzy.
I somehow spotted family members cheering me on shortly after—it was a great shock. They hadn’t told me they were coming, and they’d all had T-shirts made and brought signs. Wow, this was a great boost.
When I ran through the Docklands 37 years ago as a foolish 18-year-old, convinced it would be easy to run a marathon (how wrong I was), it was deserted for mile after mile. Not this time—it was thronged the whole way. Many were clutching pints of beer—oh, wouldn’t that be nice instead of this horrible gel stuff!
About mile 18, I stopped counting down each water stop and started looking out for each St John’s Ambulance post! I was going to make this—I was going to be fine—but just to be on the safe side… I found someone giving out ice—fabulous. I filled my hat—bliss. Water fountains—brilliant. This parrot was about to pretend to be a duck. Onwards and onwards—I was determined to make it. So many people were following me on their apps, and an incredible amount of money had been pledged in donations—what pressure.
My wife Claire had managed to get my mum on a mobility scooter and my son Harry in his wheelchair to the course—an amazing feat with the number of people. They got there by the Thames Clippers from Putney. I had made flags and bought Harry a helium balloon so I would spot them. The balloon string got caught on a wire and floated off—Harry is still upset. I was so focused on putting one foot in front of the other (please don’t look at any pictures of me from mile 23 onwards—I’m very much a whiter shade of pale!) that I didn’t see them. I’m still absolutely gutted. They’d made such an effort to get there, and it would really have boosted me for the last few miles—and boy, did I need it. Such a shame, but at least they saw me and knew I was still alive—just. A word of advice: mobile signals are very sporadic, and the tracker doesn’t always work. Not very helpful when they were already so worried for my health.
Anyway, onwards—not far to go, counting down the steps. I had another boost when I got shouted at by some marshals. They told me they were British Airways crew (the company I work for) and had been tracking me. How nice of them. They even took a fab photo. (Note to self: must volunteer in the future for this fantastic event.)
Finally, the magical sign: 385 yards to go. Yes, yes, yes. I had so many plans for a flying finish. I flapped as hard as I could, then noticed a camera to my left on rails tracking me all the way down The Mall. How special—and what amazing footage. I wish I’d pulled faces or something, but all I wanted was the line—and yes, I made it. “Oh, what a feeling,” as the song goes. I was an emotional wreck. So many thoughts, so many memories—it was utterly surreal.
Within 10 feet, I was grabbed by a lady from BBC TV and asked to go onto a platform. There was a commentator and a cameraman struggling to get all of the wings in shot. I really can’t remember the interview or what I said—I could barely speak with both exhaustion and emotion. I haven’t seen the clip either. It was probably unusable.
Then came the medal, and I was left to stagger up The Mall with people lying all over the place. My phone had little signal or battery—I sent some texts to say I was alright but still couldn’t contact my wife. Had they even managed to get to the course?
I wandered on, sort of floating. My body was happy now the torment had stopped, but I felt very queasy from the gels. Fellow runners were congratulating me—I know not why. We had all done the same distance—why me? I got out of the runners’ zone into the general public, and again everyone was very nice to me. It was as if they knew me—they had seen me somewhere along the course. My brief bit of stardom. Hopefully I’ve spread the word of Action Duchenne.
I finally made it to our meeting point, and poor Victoria got a very sweaty and emotional hug. Worse was in store for Louise—we’d never met before, yet I felt we were so close from all our chats over WhatsApp. She has an amazing and very emotional story of her marathon journey, as you may have read. Wow, was it good to finally meet up—and what a success. She looked in amazing shape, as if she had hardly broken a sweat.
Then Claire (my wife), Harry, and my other son Toby arrived—what a relief. They had found me, seen me, and everything was OK. In tradition, I gave Harry my medal—he quite liked this one—and in exchange I was presented with a “Greatest Dad” one. You may see it in our group picture. A lovely little gathering as we awaited the arrival of Leanne, who had started in a later wave.
Victoria gave me a cup of tea—I don’t know where it came from, but wow, did I need it. I wasn’t well—again, please don’t look too closely at the photos. I needed a sit-down on a kerb by a memorial but was soon moved on by a passing policeman. No sympathy there!
When Leanne arrived, the emotion was amazing—we had all made it. Team Action Duchenne was complete. Mission accomplished, and every one of us had our own special story to tell.
I was in for a final surprise. When we disbanded to go our separate ways, I staggered to a pizza restaurant with my mum, Claire, Toby, and Harry. We got inside, and there at a table were a large group of my family and friends. They had all made the effort to come down in secret to support me. They all had T-shirts and signs and had made a big effort to be there. I was truly touched—a lovely way to top an unforgettable day.
The London Marathon is unsurpassed by any other marathon in the world. The support, camaraderie, and atmosphere can only really be understood by being there. How special to be there on the monumental day that the two-hour barrier was broken.
I’m so lucky I finally got a place in the ballot to do a marathon properly.
I was truly blessed to have Leanne and Louise as teammates—they’ve been absolutely amazing support.
To Victoria, I am so grateful for all the time she put into looking after us—I don’t know how she did it. A true team leader who made this whole adventure so wonderful.
Was running this marathon in costume a good idea? Absolutely. It achieved everything I wanted: a chance to bring attention to the amazing charity Action Duchenne and all the incredible work they do. It brought sponsorship from people I have never met, and I’ve raised far more than I ever expected. It was a lot tougher than I bargained for, but I made it—and the sense of elation is priceless.
Would I do it again? I think this ancient fool has finally realised he’s not invincible, and I now have some very happy memories of a great success to cherish.
Ben is now an ex-marathon birdman!
Leanne’s London Marathon Story 2026
Running the marathon had never really crossed my mind. I’d taken part in shorter runs for Action Duchenne before, and after Leon passed away, we took on the Vitality 10K as a family in his memory. Together, we raised an incredible £8,000. It was during that time that I started thinking I could push myself even further, take on the main event, and raise even more money. In a way, I think it also helped through the grief.
Running the London Marathon is up there with one of the hardest things I’ve ever done and not just the day itself. The training throughout winter, finding the time while working full time and raising two kids, dealing with the niggling injuries and constant fatigue… it was tough. But I can honestly say to anyone considering it: if you put the time in, you get the reward on the day.
The atmosphere was incredible. Watching complete strangers support each other restored my faith in humanity and completely filled my heart. The day itself was hugely emotional. I think that’s heightened when you’re running in memory of someone, or for a cause that means so much to you, but even without that, the emotion of the day is overwhelming. I cried for days afterwards.
One thing I’ll always say about the marathon is that it’s unlike any other run I’ve ever done. The crowds were absolutely incredible from start to finish. My name was shouted more times in those few hours than it is at home with my two girls and any parent of young children will know just how much that is! I was so lucky to have family and friends there supporting me, and seeing their faces made such a huge difference, especially after 20 miles when the legs and mind really start to struggle.
There were so many standout moments along the route. Running through Cutty Sark was amazing, the atmosphere there was unbelievable. Crossing Tower Bridge was another huge highlight and I think every runner would probably say the same. Reaching halfway there just gives you such a lift. I also loved running through Canary Wharf. It was such a hot day that the shade from the buildings felt like heaven, and running through the sprinklers honestly made me feel like a kid again.
The crowd really do carry you through the race. So, if you take it on soak it all up, high five the children, tap the “go faster” signs they’ve coloured in, and enjoy every moment of it. Just maybe ignore the people around mile 23 shouting, “It’s only a parkrun left!” because most people know a parkrun is hard enough on fresh legs… never mind after already running 23 miles!
I keep saying to people that it’s a bit like a wedding, months of build-up, planning, talking about it constantly, and then the day itself goes by in a blur and suddenly it’s over. But looking back at the pictures and videos lets you relive what an incredible day and achievement it really was to run the London Marathon.
Meeting the other two runners for Action Duchenne was also one of the highlights of the whole experience for me. Three completely different people brought together by the same goal, supporting each other through all the highs and lows along the way. I can honestly say I think we’ll take on another challenge together in the future.
Finally, I just want to say that Victoria and the rest of the Action Duchenne family are incredible human beings. The support they give is amazing. When you run for them, you’re not just a number or a fundraising target, you genuinely feel like you’re making a difference. You see what your fundraising helps achieve, how it supports families, and how it helps the boys living with Duchenne. I think we did them proud.

Lou’s London Marathon Story 2026

I was a very late entrant but probably better that way when you have a nervous disposition!! The whole reason I plucked up the courage to attempt to get a place was because Andrew, knowing how terrified I am of London, promised to get me to the start line. On Friday night on my way home from work, he called me to say he was too unwell to travel. I immediately thought, that’s it, I’m deferring, then I reflected on what this marathon meant, not only to me but to my friends, family, and my new Action Duchenne family. My children, Cameron 20 and Ruby 17, decided that they were still coming to support me. Nerves hit me throughout the night Saturday, then Sunday morning. I really struggled to believe that I was actually going to attempt to run The London Marathon. My hands were shaking so badly that my school friend, Suzanne, had to help me pin my number to my vest. Her house was a 10-minute walk from the start line, and she was happy to walk me there to ease my stress levels. Once in the park, I didn’t really know what to do, so I sat under a tree and called Andrew, then my parents. I started chatting to a lovely lady called Nunu, I told her that my nieces and nephews call me that as Lulu was tricky for them to say as toddlers. I then spoke to another lovely girl, Ffion, as we walked to the start line. I still didn’t really believe that we were about to embark on the biggest marathon on the planet!
I don’t think anything could have prepared me for the next 4 hours, 27 minutes and 15 seconds. It was absolutely magical!! I decided right from the start that there was no way that I was going to try and get a PB. This would be a once in a lifetime experience, and I was going to enjoy it. Plus, 20 degrees is not a comfortable temperature to run in.
Nothing could have prepared me for the thousands of people lining the streets to offer their support in the form of cheers, banners, food, drinks, and music. I need their encouragement to keep me smiling, so I ran along the barriers. At mile 6, I heard Cam and Ruby cheering for me, and that was incredible as I knew how proud they were of their crazy mum. I didn’t let my smile slip once and when I saw the man with the fridge on his back, I told myself what have I got to complain about. Mum had bought me a gorgeous silver heart shaped locket and filled it with George’s ashes. Everytime I needed a little reminder of why I was there, I rubbed the heart and said come on George, we can do this.
I danced with crowd, gave many a thumbs up, blew a few kisses and high fived over a thousand hands. I felt so proud to be part of London at its absolute best, a place that I would usually find overwhelming felt like home.
Running along the Mall didn’t feel real and crossing the finish line didn’t either!! I took my photo of George and Cameron out of my bum bag and kissed it as I crossed the line, followed by happy tears. Once I received my medal, I sat down and chatted to a girl who had flown in from Atlanta to take part. Cam then rang to congratulate me, which made me extremely emotional so I walked to meet them. On my way along I heard someone shout my name and there in front of me was 1 of my best friends who lives in Cornwall. She was very emotional and took a fabulous picture of me that I will treasure forever!
Eventually I made it to The Action Duchenne meeting point and was delighted to finally meet our amazing Victoria, her parrot earrings were perfect! Ben flew in, followed by his family. Meeting Harry was most definitely the highlight of the day. He was simply hilarious when he walked out of his chair and gave his dad the medal he was wearing. … He swapped it for Ben’s medal and popped it round his neck, I still don’t think that Ben has retrieved it….
Ben, said to me….wasn’t the ship amazing Louise??, I asked him what ship? Only the Cutty Sark that I completely missed. Good job this year’s medal focuses on its history!
George would have hated the crowds in London but he would have loved to watch it on television, like he did every year He would have told me how crazy I was for even considering the challenge but I know how proud he would have been, crossing that line with me.
The reality of George dying was and still is torture however I feel so honoured to be loved and supported by so many wonderful people that have believed in me and helped me raise a massive amount of money for a charity that means the world to me. Ben, Leanne and Victoria will now be my lifelong friends…..we have shared such personal journeys.
When I got on the train that evening, the whole thing felt like a dream!

