Welcoming Summer
It feels as though we have waited a while for warmer days this year and it is hard to believe that we are already over half way through 2024, and that the school year is coming to an end! As I write, I am aware of the additional challenge that long school holidays bring for many of our families and I am thinking of our Duchenne community as they navigate this time.
Inviting you to the 2024 Annual International Conference
I am delighted that we have launched the registration for our 22nd Annual International Conference.
You are invited to join us on Friday 8th and Saturday 9th November 2024, at Leonardos in Hinckley. This event will cover key aspects of life with Duchenne through three content streams, offering expert insights and community connections. The conference is family-friendly, with a free creche and engaging activities for young people. Tickets are free for Duchenne families, with grants available for travel and accommodation. For more details, visit our news page.
Ask your questions
The Pharma Q&A session at our 2023 Annual International Conference was such a success that we are doing it again for 2024! It’s your opportunity to put your question to a panel of representatives from Pharmaceutical companies. We want to gather as many questions as possible from the Duchenne community – to get YOUR question answered, please email it in mehreen@actionduchenne.org or john@actionduchenne.org.
Out and About
Action Duchenne’s 2024 Science on Tour kicked off in Oxford on 11th June, featuring workshops that simplified the science behind Duchenne, and fostered open discussions. The event extended to Ashfold School, where children learned about disabilities and inclusivity. The enthusiastic response highlighted the importance of understanding and supporting peers with Duchenne. Find out more about our school visit here.
As well as school visits, our Support Officers have recently been active at a variety of events, with more planned. Dawn attended a families day hosted by Alder Hey Children’s Hospital (read her blog here), Kelly supported an event for newly diagnosed families run by Care Advisors from Nottingham, Leicester and Derbyshire. Victoria, along with her family, participated in the in-person Turning Point meet-up at Thomley (read blog here). These events provide invaluable opportunities to connect with children, young people and their families, understand their support needs, and help them build their support networks.
Join our next online science education webinar on Monday, 22nd July, at 5pm. Representatives from the MHRA (Medicines and Healthcare products Regulatory Agency) will give a 15-20 minute talk followed by a 20-minute Q&A session. They will discuss the MHRA’s role in drug approval, helping to clarify this complex process and support families facing related uncertainties.
Parallel Windsor 2024
Action Duchenne were proud to be a charity partner for the Parallel Lifestyle flagship Festival of Inclusivity, held on 7th July 2024 in the grounds of Windsor Great Park and staged on the iconic Long Walk. This is a truly accessible and inclusive event, with a variety of options for taking on a challenge. We were delighted to have 20 people taking part, some doing the 5km and some taking on the 1km, some walking, some running and some using their wheels. Everyone did brilliantly, keeping spirits high despite the rain and also had a chance to experience some of the amazing activities at the festival too. I very much enjoyed taking part in the 5km challenge with my family and having the opportunity to do this alongside Action Duchenne staff and members of our wonderful community made it a very special day. The Parallel Lifestyle events are so important to us as a charity, and their passion for increasing inclusion aligns with our core values. Here’s just a taster of an amazing day!
Challenge 79
Over the Summer we will be building up to World Duchenne Awareness Day 2024, which is a momentous date for the global Duchenne community. This year is a monumental milestone as it marks the first year that the United Nations have officially designated 7th September as World Duchenne Awareness Day, in recognition of the increasing need for advocacy and research into the condition, we invite you to take part in Challenge 79.
Do what you want, however you want, with whoever you want to the number of 79. You can do this throughout the month of September. Do it on your own, as a team, as a workplace, as a school, as a family or a group of friends.honour of the 79 exons of the dystrophin gene. Bake 79 cakes, tell 790 jokes, walk 7.9 miles as a family, cycle 79 miles, build something with 790 lego bricks, run 79 miles over the month….the options are endless.
One inspiring story features a group walking 7.9 miles together, with each step symbolising their commitment to fighting Duchenne muscular dystrophy. Their journey through picturesque countryside, shared on social media, attracted local media attention and encouraged others to contribute to the cause.
Another notable example involves a talented baker who baked 79 cakes, each more elaborate than the last. These cakes, ranging from simple treats to intricate masterpieces, were auctioned off to raise funds. Her initiative not only general substantial funds but also united the community in support of Duchenne research and supporting families living the condition. These inventive activities demonstrate the power of creativity in mobilising support and rasing awareness for Duchenne muscular dystrophy.
Welcoming new trustees and saying farewell and thank you
Like other charities, Action Duchenne cannot operate without our dedicated team of trustees, all of whom bring skills, knowledge and experience to enable us to deliver our work. I am delighted to welcome three new trustees to join our existing members. I wanted to extend a warm welcome to Anna, Vicky and Greg. All have personal experience of Duchenne as well as a wealth of knowledge between them and I know they will bring so much to our team. We also bid a fond farewell to Victoria Penrice, whose contributions have been invaluable. You can read more about this transition and view the biographies of our new trustees on our website.
Staying strong together
As we embrace the warmth and joy of the summer holiday, let’s remember the strength and unity of our community. Together, we have shown that through support, determination, and shared experiences, we can make an impact in the fight against Duchenne muscular dystrophy. Enjoy this special time with your loved ones, cherish the moments of togetherness, and continue to inspire one another. Let’s stay strong, stay connected, and celebrate the beautiful spirit of our community. Here’s to a wonderful summer filled with hope, joy, and the unwavering belief that together, we can achieve anything.
