BenvsDuchenne

🎈For World Duchenne Awareness Day this year, I wanted to tell my story, in my words. This was the best way I could. I hope this helps many people understand how me and many boys with Duchenne feel…. Thank you to the incredibly talented @themarcobarcella for bringing this to life for me. #duchenne #wdad #awareness

What an amazing morning @stonorpark for The Great School Run. We are honoured to be the charity chosen for this year and @benvsduchenne had a great time handing out the certificates and medals to all the age groups. Such a fantastic event for all ages from Nursery all the way through parents. Perfectly organised by @accidentallyultra with a group of wonderful volunteers! THANK YOU for all your generous donations, you helped raise nearly £700! Incredible! #charity #running #fun #community #henley

FINALLY!!! After campaigning and fighting for so long to get access to Givinostat for Ben and all boys at OUH, we received the amazing news today that it’s been approved! So thankful to @duchenneuk for all their support and hard work through the #timeismuscle campaign. TODAY IS A GREAT DAY!!!

After following Birte Hayes’ extraordinary journey at the Marathon des Sables, this is what it all comes back to… community, movement, and the simple joy of running side by side. The Great School Run of Henley returns to Stonor Park on Sunday 17th May for a morning of cross-country races through our parkland for children, teens and their grown-ups. From nursery legs finding their stride to parents lacing up to lead the way, this is a celebration of taking part, feeling good and encouraging one another along the way. This year, the event will proudly support Ben, a much-loved local boy living with Duchenne muscular dystrophy, and his charity @benvsduchenne . Entry is free, with a suggested £2 donation per runner, a small gesture that helps raise awareness and support for something that truly matters. So whether you’re running, cheering or simply soaking up the atmosphere, come and be part of it 🌿🏃‍♀️. Visit thegreatschoolrun.org to enter and to donate. #TheGreatSchoolRun #StonorPark #HenleyOnThames #CommunitySpirit #DuchenneAwareness

I may have run deserts and marathons, but somehow this little race might be the hardest (looking at you, 2km parent race 😅), and honestly, one of the most special ones too. What started with a few local schools is now in its fifth year, and I’d love you to be part of it, Henley peeps 💛 🌳 The Great School Run 📅 Sunday 17 May | 9:30am to midday 🎟️ Sign up now: thegreatschoolrun.org A morning of cross country races for everyone, from Nursery to Sixth Form plus grown ups 🙌 But this is about more than running. We’re raising awareness and funds for the best cause that is @benvsduchenne 🩵 justgiving.com/crowdfunding/thegreatschoolrun2026 🏆 Every entry counts towards the Mayor’s Cup 👨‍👩‍👧‍👦 Open to all schools and nurseries ☕️ Coffee, snacks and a brilliant community morning I promise my life isn’t just about running 🤪 but this one really matters. Sign up now, come along, bring everyone, spread the word. 💫

Happy Birthday to the most incredible boy 💙 Zak, your kindness, love, and strength shine every single day. The way you care for others, especially your brother @benvsduchenne means more than words can say. You make us laugh, you make us proud, and you amaze us constantly. Have the most special birthday 🎉

I’ve shed a few tears over the last few days putting this story together for @accidentallyultra @benvsduchenne Words really can’t do either of them justice ❤️ Congratulations Birte on the truly extraordinary achievement of not just completing @mdslegendary but entering elite status with a top 10 finish 🤩 If you can contribute to Birte’s amazing fundraising total we would be so grateful. Link to donate is in my stories and in @accidentallyultra bio. If you’re not following these beautiful humans please do. Each of them deserve all the love 🙌 #benvsduchenne #mdslegendary #ultramarathon

I’m not surprised, but I am totally in awe of this incredible Mum, wife and friend to so many! @accidentallyultra has now completed the @londonmarathon in a PB - 3.19.29. A mere 2 weeks after finishing the @mdslegendary finish as the 9th woman overall. That deserves a nice little rest now! If you can, please share to raise awareness of Duchenne Muscular Dystrophy, or if possible donate - Link in bio. THANK YOU TO EVERYONE WHO HAS DONATED - YOU’RE MAKING A DIFFERENCE! 💪🏻💙💪🏻

On my way to London and READY TO PARTY 😁💃🤩🫶🪩 @benvsduchenne has kindly requested I come AT LEAST second…no pressure!🥇🥈🤣 But today isn’t about times. It’s about celebrating - Ben, the insane fundraising, the training, my incredible family & friends, and all the gorgeous humans in this community. Just WOW, I still can’t believe it all. Coach @brendan_lombard said “have fun”, and he’s absolutely right. I’ve shown up all year. I’ve run. I’ve done the hard things. So today? Zero expectations. Just doing what I do best when I run…SMILE 💛☺️ If you’d like to support: /crowdfunding/birte40mds

Following her exploits in the desert, @accidentallyultra is now going to take on the @londonmarathon on Sunday. Taking a 42.2 jog around the mean streets of London. If you can share or support, that would be amazing. Thank you!

Please join us on Sunday to celebrate Birte’s amazing achievement. Message her to let her know you’re coming. See you there!

Huge congratulations to Birte Hayes, who has just completed the @marathondessables , running an incredible 270km over 7 days across the Sahara. Carrying all her own food, kit and determination, Birte faced extreme heat, endless sand and even a 100km stage. But this was never just about the challenge. Birte took on this race to raise awareness and funds for Ben, a remarkable local boy living with Duchenne muscular dystrophy, and for others affected by the condition. Her strength, perspective and purpose are nothing short of inspiring. At @stonorpark , this story feels especially close to home. Birte is a familiar face at The Great School Run, and this year, the event will proudly support Ben and his charity @benvsduchenne . Movement is something many of us take for granted. Birte’s journey is a powerful reminder of just how precious it is, and how it can be used to make a real difference. We can’t wait to welcome Birte back to Stonor Park this May, running once again, this time alongside our wonderful school community 💫. If you’d like to support Ben, learn more via @benvsduchenne . #StonorPark #GreatSchoolRun #MarathonDesSables #RunForACause #HenleyOnThames CommunityMatters DuchenneAwareness