This article is written by Florence Boulton, National Director
“We are all stronger, together” is a fantastic motto, but it’s even better when put into practice!
On Bank Holiday Monday, the Action Duchenne running team demonstrated their power and strength, coming together to smash personal bests, and spread the love at this year’s London Vitality 10,000 event.
Community Fundraising Officer, Victoria and I met at the start-line of this exceptionally well organised and accessible event (a big well done and thank you to the Vitality Team!). With our kiddies in tow, we searched the sea of faces for our runners; the inimitable Marion Main (Lead Physiotherapist at GOSH), Head Teacher and Duchenne Uncle, Amit and his colleague, teacher, Sharv. Just as we were resigned to the fact that we’d missed them, we spotted the Action Duchenne logo and screamed at the top of our lungs; “Amit! Sharv!!! whooooo!”. The pair’s faces lit up, they beamed with pride to be taking on this event, and we felt happy to have filled their sails at the start of the run!
You may remember over lock-down, Marion joined us for 6 evening webinars where she gave our families hands-on, practical advice and help about physio. These valuable sessions included; how to keep active during the pandemic, exercises on the floor and in chairs, splints and orthoses and how to make stretches fun. Having avidly watched these webinars, and marvelled at Marion’s dedication and love for the Duchenne community, I was in absolute awe to meet her. Her drive and passion for supporting children, young people and adults who live with Duchenne and their families shone through, and I was so happy to finally meet her in person.
So, back at the Vitality 10k! The iconic running route takes in some of London’s most famous landmarks including Admiralty Arch, St Paul’s Cathedral, the Bank of England, Somerset House, Big Ben, the Houses of Parliament and Westminster Abbey, it’s literally a sight-seeing tour to accompany the 10k run. The atmosphere was celebratory, inclusive and joyful.
For many, this was the first mass participation event they had taken part in since lockdown, and certainly for my family and I it was the first time we’ve been able to be involved in such an event. It felt great to be out in Green Park with the children, enjoying the refreshing air and supporting our brilliant runners.
It’s an event that I can recommend to you all to take part in, and if you are feeling inspired by our runners and our Events team, please sign up for next year’s Vitality London 10,000. We have 30 spaces to fill, so if you can get your work team, friends and family involved, we’d love to welcome you onto the Action Duchenne team!
Peer-to-peer success stories
We all have ‘those days’. I had a day like that last Friday. The end of a long week working, making lots of progress, but lots of late nights and early mornings. I was running out of steam when I received a link from one of the team, saying “I think you might appreciate reading this…”
I opened the link and read the article ‘Meeting a fellow mom – Ruth’s story’. Tears welled up in my eyes. Tears of pride, of admiration and of achievement. The article explains how Ruth, a Duchenne mum, was introduced to a fellow Duchenne mum, by my Support Team here at Action Duchenne. I know how carefully the team considers each peer-to-peer match; working together to think about not only location, but personality, situation, family and interests. For Ruth and Claire and their families, the match has been life-changing.
For me, as Ruth’s words sank in, it gave me power and renewed strength and utter determination to continue to put all my energy into the much-needed ‘All-through Support’ project which has created this peer-to-peer project.
The nuts and bolts of the science of Duchenne
This week, we proudly launched registrations for the Science Education Programme. The Action Duchenne team will be travelling the length and breadth of the UK and Ireland talking you through the nuts and bolts of Duchenne to help you understand the why? and how? and what?
Our aim is to give you a deeper knowledge of the hard-to-fathom science, from what ACTUALLY is dystrophin, and what is it about exons that makes them not fit together in the gene, to how corticosteroids actually work. Having spoken to hundreds of Duchenne families over the last two years, my team and I know how much you have all missed being together in person, so these informal sessions will give you a great opportunity to meet others, share experiences and have a chat over a coffee and a yummy sandwich.
The workshops are fully inclusive, free to attend and open to all; including adults living with Duchenne, Duchenne parents, carers and families, Action Duchenne supporters and Members, teachers and TAs, community physios, healthcare staff and anyone who looks after a person living with Duchenne.
I am excited to be joining my expert team at a number of the venues across the country, meeting the Duchenne families and supporters. We’re kicking off in Cambridge on May 31st, swiftly followed by Oxford on June 1st. Please register to join at any of the 24 locations using the link below, tickets are free and available to all. We are literally bursting to see you all!
The project forms part of our ‘All-through Support’ project which has been supported by Garfield Weston Foundation, HM Government (in partnership with the National Lottery Community Fund), Pfizer, PTC Therapeutics, Roche and Sarepta Therapeutics.
I look forward to bringing you another update soon, in the meantime, stay safe and take good care of yourselves.
Florence
Peer to peer support – Chloe and Lyndsey
