Duchenne UK

05/06/2026

Calling all our supporters, are you looking for your next challenge? We've still got charity places available in some fantastic events this year!

🏃 7 spaces available for the Great North Run
🌳 5 spaces available for the Royal Parks Half Marathon

By joining , you'll be helping to fund groundbreaking research and improve the lives of those living with Duchenne muscular dystrophy.
Whether you're taking on your first event or chasing a new personal best, we'd love to have you on the team. We'll support you every step of the way.

✍ Sign up today and help us bring hope to families affected by Duchenne. Get involved by emailing: [email protected]

05/06/2026

We have an exciting opportunity to join our team as a Community & Events Fundraiser.

You can find out more about the role and how to apply for it here.👇

We have an exciting opportunity to join our ambitious, fast-growing charity as a Community & Events Fundraiser and play a vital role in helping us end the devastating impact of Duchenne muscular dystrophy (DMD).

04/06/2026

An occupational therapy student at Leeds Beckett University is undertaking research into the experiences of students with muscular dystrophy - and is looking for current university students who have muscular dystrophy to help with the research.

It would involve a 45-60 minute online interview via Teams, and all information that is shared during the interviews will be anonymised.

Like to know more or take part? Email Jasmine at [email protected]

02/06/2026

A huge thank you to the Northern Ireland Carriage Driving Association for their generous £500 donation to Duchenne UK.

The donation was presented to James Hare and his family at a special cheque presentation at thew weekend, helping to support our mission to end Duchenne muscular dystrophy.

We are incredibly grateful to them and everyone involved for their support. Every donation helps us fund vital research, improve care, develop innovative new technology, and bring us closer to ending Duchenne.

Thank you for standing with our Duchenne community and helping us make a difference.

30/05/2026

A huge congratulations to our Chair, , for taking on Celebrity Bridge of Lies and raising crucial funds to support our work! 🎉

Krishnan has been a passionate champion for our community for many years. It was his idea to set up the Duchenne Dash, and he has cycled thousands of miles for us on it!

We’re incredibly grateful for his continued support in helping us improve the lives of everyone affected by Duchenne.

Thank you, Krishnan, for raising funds (and awareness!) for Duchenne UK. 💙

You can watch Krishnan on Celebrity Bridge of Lies on BBC iPlayer now!

28/05/2026

Duchenne UK and our partners in Duchenne Care UK, along with Muscular Dystrophy UK (MDUK) and Action Duchenne, are hosting a joint webinar to discuss the recent NICE (National Institute for Health and Care Excellence) approval of givinostat. The session will bring together leading clinicians and patient organisations to explore what this decision means for the Duchenne community.

Speakers include Dr Michela Guglieri and Dr John Bourke, who will provide clinical insight and answer questions from attendees.

The webinar will take place from 7-8pm on Thursday 4 June via Zoom. It’s an opportunity for families, carers and professionals to hear the latest updates and understand next steps following approval. You can join it using this link: https://us02web.zoom.us/j/81961733648

19/05/2026

Researchers at the University of Glasgow are looking for young people with Duchenne aged 7-21, and who are on daily steroids, to take part in the NutrInD study (Nutrition in Duchenne).

The study aims to find out more about the nutritional needs of young people with Duchenne. The research team is especially looking for non-ambulant (not walking) boys, although also still recruiting for ambulant boys.

The research team is also looking for boys who don't have Duchenne to take part in the study as a control group.

We are funding the project as part of our part of the Duchenne Care UK nutrition project, so please take part to help shape clinical care!

You can email [email protected] if you'd like to know more about it and take part.

19/05/2026

👉 This is your chance to take part in research on respiratory care for Duchenne muscular dystrophy.

🧬 The Inclusionaries Lab, in partnership with Duchenne UK, is conducting research to better understand experiences of respiratory care and help improve future products, services, and support.

🗣 We’re inviting people with DMD, as well as family members and carers, to take part in activities such as online interviews, questionnaires, observations, and diary studies. Participation is voluntary, and you can withdraw at any time.

📝 Interested? Complete the short Study Interest Form here: https://forms.office.com/pages/responsepage.aspx?id=MVElUymxEECG4UdL_X6AdotNi6SIWAJHvW4wC1bCG7hURTExUUgzU1Q4NklPNkZTTkVRMUJRMkVNSS4u&route=shorturl

All information shared will be kept confidential. For questions, contact: [email protected].

13/05/2026

👏 We would like to say a huge congratulations and thank you to this incredible group of people who took part in the Duchenne Dash this weekend!

More than 130 Dashers cycled 300km from London ➡️Paris in 24 hours and so far they’ve helped us raise an incredible £700,000!

In 14 years, the Dash has raised more than £9million. It’s the power behind Duchenne UK helping transform the landscape for people with Duchenne muscular dystrophy (DMD) and their families.

And there’s still time to donate to help us reach £10million and further our mission to

👉 You can donate here: https://www.justgiving.com/campaign/duchennedash2026

13/05/2026

📣Dr Jarod Wong and Dr Laurie Cave, who lead the Duchenne Care UK Nutrition Working Group, would like to invite you to take part in online group sessions for families.

The sessions are the start of sharing key recommendations from the soon-to-be-finalised Duchenne Care UK guidance on nutrition in childhood, and for peer learning.

Sessions will run for 45-60 minutes:
📍10 minutes sharing what the recommendations mean practically - ideas and top tips for managing nutrition.
📍35-50 minutes facilitated open discussion, with the opportunity to ask questions and hear from other families sharing their experiences of what works well.

Based on feedback from earlier sessions, each session will be limited to up to six families to allow plenty of time for discussion and sharing experiences. Because places are limited, please only register if you have not attended this session before.

Sessions will focus on:
👉6-7pm, Thu 4 June - Nutrition when approaching loss of ambulation
🔗a61a61e4-6afb-4800-8d0e-f379b3f4af7e@9c5012c9-b616-44c2-a917-66814fbe3e87" rel="ugc" target="_blank">https://events.teams.microsoft.com/event/a61a61e4-6afb-4800-8d0e-f379b3f4af7e@9c5012c9-b616-44c2-a917-66814fbe3e87
👉6-7pm, Wed 24 June - Nutrition for adolescents aged 14-18 years (in preparation for transition to adult care)
🔗fb7ea4bb-671d-4b65-bc2b-e7401f54dd9f@9c5012c9-b616-44c2-a917-66814fbe3e87" rel="ugc" target="_blank">https://events.teams.microsoft.com/event/fb7ea4bb-671d-4b65-bc2b-e7401f54dd9f@9c5012c9-b616-44c2-a917-66814fbe3e87
👉6-7pm, Thu 9 July - Eating and neurodiversity in DMD (together with Dr Chloe Geagen, children’s clinical psychologist at Newcastle University) 🔗1820f459-f616-4165-8665-53ce037c6a15@9c5012c9-b616-44c2-a917-66814fbe3e87" rel="ugc" target="_blank">https://events.teams.microsoft.com/event/1820f459-f616-4165-8665-53ce037c6a15@9c5012c9-b616-44c2-a917-66814fbe3e87

📧If you have any questions about joining the sessions, please email [email protected] or [email protected]