The Heart of Care
We have had some key reminders of what we are working towards as a charity over the last few weeks. Volunteer’s Week (2nd – 8th June) was a chance to thank all of the people who give up their time and expertise for Action Duchenne. From the team of trustees, those who volunteer at our conference to those who support our fundraising events, our volunteers help us to continue our work. They remind us that our community is a culmination of many parts coming together for a common cause, and that we are stronger together.
Similarly, Carers Week (9th – 15th June) was an opportunity to reflect on the impact that a Duchenne diagnosis has on the families we support, and emphasised the need for us to continue our work to strengthen the support we can offer your family for the whole Duchene journey.
Family: the heart of care
In keeping with this, we were delighted learn that the theme of World Duchenne Awareness Day 2025 has been announced as “Family: the heart of care”.
“With this year’s theme, World Duchenne Awareness Day (WDAD) highlights the role of family members for people living with Duchenne and Becker muscular dystrophy.Living with Duchenne muscular dystrophy (DMD) is a journey marked by both physical challenges and emotional resilience. At the center of this journey is family. The love, support, and daily involvement of family members play a vital role—not just in caregiving, but in shaping the quality of life and emotional well-being of those living with DMD.” World Duchenne Organisation
Join us for Duchenne Awareness Day 2025
2025 is the second year following the milestone decision by the UN to officially designate 7th September as World Duchenne Awareness Day, highlighting the need for awareness and support. We want to join with the global Duchenne community to raise awareness not just of those living with Duchenne, but of the families and communities who live it every day alongside them.
We can’t do it without you and there are so many ways that you can get involved.
Share your story with us
We’d love you to share your stories with us as we lead up to World Duchenne Awareness Day, to help us increase understanding of what the Duchenne journey really means for the families in our community. We know that the Duchenne journey is filled with challenges. But it’s also filled with courage, love, and fierce advocacy. Your story matters. Watch this space for more information about our plans to get your stories out there.
Take on a Challenge for Word Duchenne Awareness Day
For the third year running, we want to invite you and your family to take part in Challenge 79—a simple, creative way to raise awareness and feel connected with the global Duchenne community. Pick an activity connected to the number 79—big or small—and do it in your own way, at your own pace, with your favourite people.
Do it as a family, with your school, your workplace—or just for yourselves. There’s no right or wrong way to take part. Whether you’re walking, wheeling, baking, drawing or doing something completely unique, your Challenge 79 is all about what works for you.
Once you’ve picked your challenge, be sure to register so we can support you every step of the way. Need help or advice? We’re just an email or message away.
We’d love to see what you get up to! Send your photos to fundraising@actionduchenne.org or tag us on social media using @ActionDuchenne and #Challenge79
Support for You
The theme for this year’s Duchenne Awareness Day highlights the need for support for everyone connected to someone living with Duchenne. For many of us, “Family” doesn’t only mean those we are related to, but the family we choose. Our monthly online support groups for dads, mums and grandparents are a way to connect with others who truly understand and to find your support network. Held during the first week of every month, whether you’re a regular attendee or thinking about coming along for the first time, you’ll find a warm welcome, like-minded people and a community to be part of.
Webinar Series 2025
Our Webinar Series 2025 aims to empower you to make informed decisions, shining a spotlight on the challenging spotlight on the most challenging and important areas of Duchenne muscular dystrophy. So far we have welcomed Dr David Schonfeld, who focussed on how to talk to your children about the diagnosis, and how to navigate grief and loss, followed by Dr James Poysky who spoke about challenging behaviour and neurdiversity in Duchenne. In June, our webinars have looked at Bone Health and Puberty with Dr Jaron Wong and Dr Claire Wood, and the last in this section will take place TODAY 17th June at 6pm. Dr Jaron Wong will join us again with a webinar about “Weight Management and the Impact of Steroids”.
“My take-away from the session was the impact of taking steroids for a DMD boy has on their puberty development and the importance of having the conversations with them about this – within families and as professionals” Webinar Attendee
Our next section will look at Education and Healthcare, beginning on 7th July at 6pm with Janet Hoskin and Benjamin James who will discuss their paper “Recognising emotional and educational needs of children and young adults”.
Each of our webinars is an amazing opportunity to hear from the experts in the field, ask your questions and gain understanding that will help you to feel more confident in the decisions you make along this journey, and all from the comfort of your own home.
Support for young people
Supporting children and young people living with Duchenne is an important part of our work and although we have finished our latest programme of Yes I Can online sessions, we’ve got an opportunity for young people aged 8 – 14 to have a virtual meet-up on Thursday at 5pm. We know that it can be a challenging time of transition for many young people, especially those who are moving from primary to secondary school and who are experiencing big changes in their mobility. Young people living with Duchenne share so many common experiences that no one else can understand, and our Turning Point Online Hang Out is the place to connect.
Register here to join us on Thursday.
Mentors
We know that sometimes the most useful support and guidance that Duchenne parents and carers find comes from within the community, from those who truly understand the challenges. The same is true for those living with Duchenne too.
Action Duchenne is looking for Mentor Champions who would like to support young people living with Duchenne in their journey to adulthood. Our mentors will deliver online sessions to small groups of young people living with Duchenne aged 14 – 25. The sessions can focus on a variety of topics and we’d love to hear from you about the skills you have to share.
Our first mentoring programme was run by DJ and Music Producer Sanjeev Mann. Sanjeev worked with a small group over a number of weeks, teaching them how to use music making software to make beats and writing lyrics to go with them. Sanjeev also felt that he gained a lot from the experience, including confidence in his ability to teach the use of the software as well as developing his leadership and communication skills.
“It was great to give advice and share my knowledge. I enjoyed developing their skills and speaking to them about their emotions.”
If you’re interested in inspiring the next generation of young people living with Duchenne and empowering them to take control, we’d love to hear from you: info@actionduchenne.org
Annual International Conference 2025
We are working hard behind the scenes to prepare to open the registration for the Annual International Conference 2025. Taking place on Friday 14th and Saturday 15th of November at Leonardo Hotel in Hinckley, we hope that you and your family will join us to make our 2025 event our best one yet! Our conference truly is a place for the whole family: as well as 20+ sessions over two days covering a huge variety of topics and bringing you the most up to date information, we’ll also have our professionally run creche for younger children, the HangOut for teens and our PitStop to offer time out and support for adults whenever they need it. Find out more and register your interest to make sure you’re the first to know when we open our registration.
As we head into the Summer months, with school transitions looming and school holidays changing our day to day routines, please remember that we are here to support you and your family wherever you are in your Duchenne journey. We hope that you are able to enjoy special moments together in the longer, warmer days, and that you feel part of the wider community that is at the heart of the work we do.
