An Action Duchenne Spring Update
As we head into May, welcoming warmer days and lighter evenings, it’s a time to reflect back over the first few months of 2025 as well as look ahead to the many exciting events still to come.
Webinar Series 2025
A highlight of the year so far, The Action Duchenne Webinar Series 2025 began in March 2025 and aims to shine a spotlight on the most challenging and important areas of Duchenne muscular dystrophy and to bring national and international experts to you in the comfort of your own home. We began the series with Dr David Schonfeld, internationally renowned developmental behavioural paediatrician and regular Action Duchenne conference speaker. Delivering two webinars focusing on coping with the diagnosis and on coping with grief and loss, this was a brilliant start to a series that will cover a wide range of topics and deliver something for everyone.
“In our first session, David guided us through the often-daunting task of talking to children about their diagnosis. He reminded us that open dialogue and honesty are key; “The best time to inform children is when you find out, the second-best time is now”. Read the rest of our Science Communication Officer John’s blog here
Dr James Poysky, internationally recognized expert in the impact that Duchenne muscular dystrophy can have on learning, behaviour, and emotional adjustment, is our second webinar speaker and having looked at how to cope with challenging behaviour, his next session will focus on how a parent/carer of someone living with Duchenne can prepare NOW for future independence. Our webinars will continue to run until October, and our varied programme has sessions on everything from bone health to the positive impact of gaming. Have a look at what’s coming up and book your place!
Yes I Can
We have come to the end of our most recent programme of Yes I Can Online and we’ve had some brilliant and varied sessions. We started back in December 2024 with The Money Charity delivering two different topics around managing our money and financial wellbeing, before beginning three sessions on Game Design with MindJam. This was an amazing opportunity for some of you to showcase your creative talents and it was fantastic to witness your ideas develop into a game concept. This was followed by Jack Bosanquet who spoke about university life and independence, Sanjeev Mann focused on Mindfulness and Positive Mindset. Our final session of the programme was with Festival Spirit who shared their charity’s mission to enable everyone to experience a festival. We’ve also had some social sessions led by Ravi which have been a great opportunity to get to know each other, catch up and have some fun together. We also had our first mentoring sessions, run by Sanjeev Mann, a music producer and DJ who also lives with Duchenne. He taught a small group of young people to make music using Beat Making software along with creating lyrics inspired by Rare Disease Day.
“It was great to give advice and share my knowledge. I enjoyed developing their skills and speaking to the young people about their emotions” Sanjeev Mann
We are now in the process of planning for our next programme, as well as our 2025 Summer Residential. Taking place from Friday 22nd to Monday 25th August at the Calvert Trust in Exmoor, the weekend is open to anyone aged 16-25 living with Duchenne who has NOT taken part in a residential with Action Duchenne before. For the young person and up to 2 carers, the weekend includes 3 nights in the accessible accommodation, all meals included and amazing fully adapted outdoor adventure activities delivered by qualified, experienced instructors.
The residential weekends sum up what Yes I Can is all about. It’s an amazing opportunity for young people to meet others living with Duchenne while taking on new challenges and increasing confidence.
Email lizzie@actionduchenne.org NOW to find out more and book your place.
Meeting In-Person
While our virtual events allow us to reach more of our community, we always love the opportunity to meet in-person. On Saturday 22nd March, we welcomed some of our amazing families to our Family Science Education Day at the Think Tank Science Museum in Birmingham. After enjoying a light lunch together, the children and young people took part in a brilliant science workshop with Sublime Science. Parents and carers had a chance to meet, chat and support each other alongside AD staff Sadia, Kelly and Ravi. Everyone had the opportunity to check out the exhibits at the museum before heading to their hotels to get ready for the Charity Dinner Dance in the evening. It was wonderful to be able to bring families together to share experiences, develop friendships and have some fun! Thank you so much to everyone who was able to join us and made it such a memorable day.
Fundraising Superstars
We are constantly amazed by the incredible efforts of our community to get out there and raise money and awareness about Duchenne muscular dystrophy. The start of 2025 has had some real highlights. Ruth Talyor, mum of 7 year old Max, and her dedicated committee organised their second charity dinner dance in aid of Action Duchenne. This wonderful event was held in Aston Villa Football Ground on Saturday 22nd March and included a 3 course meal, band, auction, raffle and disco. Action Duchenne staff Sadia, Kelly and Victoria were delighted to be among the guests, along with the families from our Science Education Day. The event was a brilliant way of raising not only funds but much-needed awareness of Duchenne, and we want to thank everyone involved.
And to continue their fundraising efforts, Max’s dad Ian, aunties Liz & Claire and friends Simon, Laura, Niki & Dylan ran the Great Birmingham 10K Run for Action Duchenne on 4th May.
We’ve also seen the start of the season for challenge events, with nine runners in the London Landmarks Half Marathon collectively raising more than £4000! And on Sunday 27th April, we were honoured to have Garry Cockrill and Gez Cole who took on the iconic London Marathon for us. Garry ran for Leon Thorn and Gez was inspired by Max Taylor. Although Gez was unable to take part in the event due to injury, we are so grateful for them both for pushing themselves to take on the huge training and fundraising commitment. Garry summed the experience up by saying he was “utterly determined to keep the pace and gave it every ounce I had”.
We still have lots of events coming up that YOU could get involved in for 2025, including Parallel Windsor on Sunday 6th July. Parallel Windsor is a Festival of Inclusivity with challenge events for all ages, health conditions and abilities. You can choose from 100m, 1km, 5km, 10km or a SuperSensory 1km. The event also boasts a fully accessible festival, offers a huge range of activities & entertainment: Music, Arts & Play, Community & Lifestyle, Storytelling, Mind Sports, Cookery, Wellbeing & Mindfulness, Family Entertainment, Travel & Leisure, and the Active Lifestyle & Inclusive Sport area, which offers adaptive sports to try out, including netball, football, rugby, laser tag & much more. Plus, delicious world foods, coffee, & picnic area. We would love you and your family to join us for an AD Families day at an event entirely dedicated to celebrating inclusivity and accessibility!
Conference 2025
We were excited to announce the date for the Annual Action Duchenne 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! We will bring together individuals living with Duchenne and their families, patient experts, clinicians, healthcare professionals and equipment providers. Register your interest now to be a part of two days of learning, connection and support which will inspire and empower you wherever you are in your Duchenne journey. Our conference truly is a place for the whole family with 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.
Mental Health Awareness Week
As we reflect on the busy start to 2025 and look forward to the events to come, our work continues to centre around supporting our families wherever you are in your Duchenne journey. Next week, 12th – 18th May 2025, marks Mental Health Awareness Week. The Mental Health Foundation has been leading Mental Health Awareness Week since 2002, bringing the UK together to focus on getting good mental health. This year their theme is community:
“Being part of a safe, positive community is vital for our mental health and wellbeing. We thrive when we have strong connections with other people and supportive communities that remind us, we are not alone. Communities can provide a sense of belonging, safety, support in hard times, and give us a sense of purpose.”
This theme sums up much of the motivation behind our work and as we move through the next few busy months ahead, it is a reminder of what we are striving for. We want to thank you, our community, for inspiring our work and for your constant support. We wish you all joy and hope for a happy Summer ahead.
