As we transition from the warmth of summer to the crisp embrace of autumn, it’s a moment to reflect on our progress and the importance of community support.
A Personal Reflection
This August marked the first anniversary of my sister’s passing. It was an emotional time for me, and I have felt her love and care more strongly than ever.
While I miss her deeply, the incredible support I have received from families and our community has been a great source of strength. I learned the sad news while attending a ‘Yes I Can’ weekend at the Calvert Trust in Exmoor in August 2023, alongside young people and their families. Your kindness during such a difficult moment meant so much to me. Here’s a glimpse of that weekend
Having seen them first hand, I know that these weekends are truly special, offering young people with Duchenne the chance to build friendships, take on challenges, and grow in confidence as they prepare for independent living. This September, we took another group of young people to the Calvert Trust in the Lake District on our 2024 residential weekend and it was a huge success. 100% of the families who came with us said that they felt they had observed an increase in their child’s confidence over the weekend, and all of them said that a highlight was the interaction with other Duchenne families. If you’d like to take part in one of these weekends, please get in touch with lizzie@actionduchenne.org
Thank you to everyone for making the weekend so special. We’ve had the best time creating the most amazing forever memories. Kerry, Duchenne Mum
Action Duchenne Mentor Programmes: Supporting Young People
We’re thrilled to share updates on our Mentor Programmes, which help young people with Duchenne as they transition into adulthood. This programme pairs them with mentors who can offer guidance on navigating education, career planning, and independent living as well as working on specific skills such as music production and game design. It’s designed to help the young people in our community build confidence and develop essential life skills for the future.
If you know someone who could benefit from this programme, or if you’d like to get involved yourself, we’d love for you to reach out and learn more: ravi@actionduchenne.org
2024 Action Duchenne International Conference
I am excited to announce that over 150 families have already secured tickets for our Annual Conference this November. With more than 30 keynote speakers confirmed, you can look forward to world-class insights into Duchenne research, clinical advancements, and personal stories from within our community.
This event will be a fantastic opportunity to learn and connect, as we continue to push the boundaries of what we can achieve together.
This year, as part of the Wellbeing aspect of our conference, we will have our Pit Stop area. This will be a a place to take a few minutes to yourself, have a chat, or a quiet cup of tea and give yourself some space. There’ll always be someone there to talk to, or to leave you alone if you’d rather. We’ll have a trained counsellor on-hand for the whole 2 days as well as a member of AD staff. To help you re-charge and relax, there’ll be free aromatherapy hand massages (from a qualified masseuse) available on both days. And one of our team will be there at all times just in case you need us.
We know that wherever you are in your Duchenne journey, there are times when the conference can bring emotions to the surface. There’s often a lot of information to absorb and it can be challenging to find the space to process it all. The Pit-Stop will give you that, anytime you need.
Tickets are FREE for Duchenne families and anyone living with Duchenne. We would love to welcome you to our 2024 event.
Expanding School Outreach
We’ve had great success with our Duchenne Awareness sessions in schools, reaching 87 professionals across six events. These sessions are crucial in raising awareness and ensuring students with Duchenne receive the support they need in school environments. The feedback from teachers and staff has been overwhelmingly positive, and we’re working to expand these sessions to even more schools nationwide.
If you’d like to bring one of these awareness sessions to your school, we’d love to hear from you. info@actionduchenne.org
Action Duchenne celebrates World Duchenne Awarness Day with Challenge 79
In connection with World Duchenne Awareness Day, we ran our Action Duchenne 79 Challenge campaign for the second year running. It acknowledges the 79 exons on the dystrophin gene, challenging you to use the number 79 in any way you want. It’s been a great success, seeing wonderful participation, from virtual fitness challenges to local community events, helping us raise thousands of pounds to support our research and advocacy work. We are so grateful to everyone who took part, and we’re already working to make Challenge 79 even bigger and better next year.
There’s still time to get involved, so why not join the challenge and help us keep up the momentum? Sign up or send us an email fundraising@actionduchenne.org] for the 79 Challenge today
Delivering Hope and Change in 2024
We are pleased to share our Impact 2024 report, which highlights the progress and achievements we have made over the past year. It showcase the hard work and dedication of everyone involved, and the positive difference we are making in the community we serve. We look forward to building on this success in the year ahead.
Your support helps us continue this life-changing work. Every donation, big or small, makes a real difference. Donate today and support our mission.
Looking ahead, we’ll keep working to improve the lives of those affected by Duchenne muscular dystrophy. Whether it’s through research, raising awareness, or offering direct support, we’re committed to transforming lives.
I look forward to seeing many of you in person at our Annual International Conference and continuing this incredible journey together.
Warm regards,
Florence Boulton
CEO, Action Duchenne
