Action Duchenne

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Action Duchenne We exist to support, empower and equip every DMD community in their journey from diagnosis and beyond.
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We spend 88.7p in every £1 on our charitable activities;

* funding ground-breaking Duchenne research for all
* providing world-class support for Duchenne families
* cutting-edge science education and campaigning

While we hope that research and clinical trials will one day lead to a treatment, or cure, for Duchenne, we believe it is vital to support families living with the condition today. We support families from diagnosis through their whole Duchenne journey.

Our new Outreach Support Officer Jay O'Reilly had a brilliant day out at Blair Drummond Safari Park this week with some ...
17/10/2026

Our new Outreach Support Officer Jay O'Reilly had a brilliant day out at Blair Drummond Safari Park this week with some of our families and can't wait to meet more of you! Thank you for coming along.

JUST ONE WEEK TO GO UNTIL REGISTRATION CLOSES FRIDAY 23rd OCTOBER - make sure you've booked your ticket! “Meeting other ...
16/10/2026

JUST ONE WEEK TO GO UNTIL REGISTRATION CLOSES FRIDAY 23rd OCTOBER - make sure you've booked your ticket!

“Meeting other families, sharing experiences, laughing, crying, learning together, that’s the heart of the conference. There’s something incredibly comforting about being surrounded by people who understand without needing words. A simple nod, a knowing smile, an encouraging “you’ve got this” – those moments mean everything.”

Alongside THREE content streams focusing on KNOWLEDGE, COMMUNITY and CARE, you will have access to 1:1 support and information sessions with 5 of our expert speakers (booking information will be shared closer to the event), a full programme of activities for children and young people in our Hangout Zone and Creche as well opportunities to connect and build relationships with families and professionals across the community.
And you'll also be able to join us for our 25th birthday celebration on Friday 13th November. Make sure you don't miss your chance to be part of it.

Everything you need. Everyone who understands. All in one place.

Registration CLOSES on FRIDAY 23rd October.
https://www.actionduchenne.org/action-duchenne-community-summit-2026-previously-international-conference/

✅ Family tickets are FREE
✅ No family will pay more than £350 for a two-night stay at Burleigh Court (FIND OUT MORE ABOUT OUR ACCOMMODATION PRICE CAP ON OUR WEBSITE)

We extend our sincere thanks to our Diamond Sponsors, Santhera, ITF Pharma UK, Entrada Therapeutics and Platinum Sponsor, Sarepta Therapeutics for their generous support, which contributes significantly to the delivery of this event.
Please note: The Action Duchenne Community Summit 2026 has received financial support from our sponsors. Sponsors have no involvement or influence in the design, content, speaker selection or delivery of the programme.

ONE WEEK TO GO!There's still time to sign up to join us for 'An Evening with Action Duchenne' on Tuesday 20th October at...
13/10/2026

ONE WEEK TO GO!

There's still time to sign up to join us for 'An Evening with Action Duchenne' on Tuesday 20th October at 6.30pm!

Hear from our new CEO Katie Endacott about our impact and our vision, our Director of Services and Safeguarding, Clare Grant, about our plans for building on our current support provision and Susie Croft, Director of Fundraising and Communications about future proofing the charity. And with just over a week to go until registration closes our Chief Scientific Officer, Dr Mehreen Arif will be sharing a sneak preview of what you can expect from our amazing Community Summit 2026!

We are honoured to be be welcoming special guest Francesco Muntoni, Professor of Paediatric Neurology who will share his reflections on the difference Action Duchenne makes to families affected by Duchenne. We’ll also be joined by Duchenne dad, London marathon 2026 runner and Action Duchenne fundraiser Ben Dolling who is planning a special challenge for our 25th year celebrations.

Ambition. Collaboration. Hope.
The free online event will take place at 6.30 on Tuesday 20th October.
https://www.actionduchenne.org/an-evening-with-action-duchenne/

DON'T MISS YOUR CHANCE TO JOIN US: REGISTRATION CLOSES FRIDAY 23rd OCTOBER"We've really benefited from coming because we...
11/10/2026

DON'T MISS YOUR CHANCE TO JOIN US: REGISTRATION CLOSES FRIDAY 23rd OCTOBER

"We've really benefited from coming because we've been able to learn about all of the latest developments, talk to all of the experts, and then almost equally is just getting to mix with everyone that's in the same boat as us. To get the opportunity to discuss our situations and what works, what doesn't work, ideas with how to cope with various issues and also to let our hair down and have some fun."
Previous Conference Attendee

Alongside our main sessions, you will have access to 1:1 support and information sessions (booking information will be shared closer to the event), a full programme of activites for children and young people in our hangout Zone and Creche and opportunities to connect with families and professionals across the community. And you'll also be able to join us for our 25th birthday celebration on Friday 13th November. Make sure you don't miss your chance to be part of it.

Everything you need. Everyone who understands. All in one place.

Registration CLOSES on FRIDAY 23rd October.
https://www.actionduchenne.org/action-duchenne-community-summit-2026-previously-international-conference/

✅ Family tickets are FREE
✅ No family will pay more than £350 for a two-night stay at Burleigh Court (FIND OUT MORE ABOUT OUR ACCOMMODATION PRICE CAP ON OUR WEBSITE)

We extend our sincere thanks to our Diamond Sponsors, Santhera, ITF Pharma UK, Entrada Therapeutics and Platinum Sponsor, Sarepta Therapeutics for their generous support, which contributes significantly to the delivery of this event.
Please note: The Action Duchenne Community Summit 2026 has received financial support from our sponsors. Sponsors have no involvement or influence in the design, content, speaker selection or delivery of the programme.

"Take the help, there’s a community here for you. I learnt that I couldn’t do it all alone and by reaching out for suppo...
10/10/2026

"Take the help, there’s a community here for you. I learnt that I couldn’t do it all alone and by reaching out for support it made it just that bit easier to cope with." Duchenne Dad

In recognition of the theme "Lived Experiences Heard: Real Voices, Real Change" for World Mental Health Awareness Day 2026 today, 10th October, and in honour of our 25 years of supporting the Duchenne Community, we’ve got 25 tips from Duchenne parents and carers, grandparents and our Support Team on how to look after your mental health. They are from lived experience and based on real understanding. There might just be one that helps today.
https://www.actionduchenne.org/25-ways-to-look-after-your-mental-health/

We also want to remind you today that we have lots of ways to support you and your family, wherever you are on your journey. Find and more and get in touch with us on our website:
https://www.actionduchenne.org/support/

Side by Side: Running Together for Action Duchenne"Lived Experiences Heard: Real Voices, Real Change": In recognition of...
10/10/2026

Side by Side: Running Together for Action Duchenne

"Lived Experiences Heard: Real Voices, Real Change": In recognition of this theme for World Mental Health Awareness Day 2026, we want to invite you to take part in our NEW fundraising challenge for Action Duchenne inspired by one of our community. This challenge celebrates all that we are; creating a community to face the challenge together.

Duchenne dad and London Marathon 2026 runner, Ben Dolling has decided to set himself the ultimate challenge. Not happy with simply running the London Marathon (and raising over £8000 in the process!) Ben has set himself the challenge of running 25 half marathons across the globe – from Mumbai to Manchester and Stratford upon Avon to Shanghai. All to mark 25 years of the support Action Duchenne has provided to families across the UK.

"I took up running as a way to help my mental health after my son, Elis, was diagnosed with Duchenne in January last year. It was one of the darkest chapters of my life so far. I ran the Cardiff Half Marathon for Action Duchenne side by side with my best friends to help make sure that every family facing this journey is not alone" Sarah

Taking part in 'Side by Side' is about so much more than finishing a race - it’s about a future where EVERY family receives support EVERY time. Find out MORE and join us on our website:

That's why you're invited to be part of our community running together, side by side for Action Duchenne. You can be part of our team in any way that works for you:

- Join one of the runs on Ben’s 25 half marathon challenge

- Be part of the Action Duchenne cheer team on a run near you

- Spread the word with your friends, family and work colleagues – we need as many people as possible to help us reach our goal

- Sponsor our team to help us reach our fundraising target

FIND OUT MORE:
https://www.actionduchenne.org/side-by-side-running-together-for-action-duchenne-your-invitation/

Sarah took up running as a way to help her mental health after her son, Elis, was diagnosed with Duchenne in January las...
09/10/2026

Sarah took up running as a way to help her mental health after her son, Elis, was diagnosed with Duchenne in January last year. She describes it as one of the darkest chapters of her life so far. Sarah ran the Cardiff Half Marathon side by side with her best friends for Action Duchenne to help make sure that every family facing this journey is not alone, and has access to stronger support systems.

Ahead of World Mental Health Awareness Day 2026, become a Friend of Action Duchenne today to make sure that we can be a lifeline for every family in their darkest moments. You can help us be there for EVERY family, EVERY time.
https://www.actionduchenne.org/friends-of-action-duchenne/

"What I found was a circle of dads, guided by the ever-steady Alex, who truly understood what I was going through. They ...
07/10/2026

"What I found was a circle of dads, guided by the ever-steady Alex, who truly understood what I was going through. They didn’t need me to explain the weight I was carrying as they’d carried it themselves. It was a space of honesty, understanding, and guidance from people who’d been in my shoes." Greg, Duchenne Dad

Before World Mental Health Awareness Day 2026 on Saturday 10th October, don't forgot our Dads Against Duchenne group meets TODAY 7th October , 8-9pm.

The theme for this year's World Mental Health Awareness Day is 'Lived Experiences Heard: Real Voices, Real Change', and we know that there is real strength to be found in sharing experiences and feeling understood.

Register to join:
WEDNESDAY 7th October, 8-9pm
Dads Against Duchenne: https://bit.ly/ADDads



“You can do anything, but you can’t do everything. Especially not all at once. Don’t feel pressured to always have the a...
06/10/2026

“You can do anything, but you can’t do everything. Especially not all at once. Don’t feel pressured to always have the answer or to fix things, no one can do that.” Duchenne Parent

With just a few days to go until World Mental Health Awareness Day 2026, we'd love to hear from you.

The theme for World Mental Health Day 2026 on the 10th October is "Lived Experiences Heard: Real Voices, Real Change"

We know that the challenges of living with Duchenne impact our mental health in lots of different ways.

Tell us:
What do you do that helps you stay well?
Is there anything you can do when you feel like you're struggling that makes a difference?
What's the best advice you'd give someone else in your position?

Comment below the post - you never know when your advice will be exactly what someone else needs.

"The future of our support isn’t just about offering more services - it’s about offering the right support, at the right...
04/10/2026

"The future of our support isn’t just about offering more services - it’s about offering the right support, at the right time, in the right way. We’re developing new ways for people living with Duchenne and Becker to have more choice, voice and control over the support they receive. Join us to hear more about how are working to make this a reality for the Duchenne and Becker community."

Have you signed up yet?
Register for 'An Evening with Action Duchenne' to hear from Clare Grant, Director of Services and Safeguarding, about what the future of Action Duchenne really means for you and your family and how YOU can be a part of it.

We'll also be joined by Francesco Muntoni, Professor of Paediatric Neurology, who will share his reflections on the difference Action Duchenne makes to families affected by Duchenne as well as Duchenne dad, London marathon 2026 runner and Action Duchenne fundraiser Ben Dolling who is planning a special challenge for to help us mark our 25th year.

Join us as we look to the future with ambition, collaboration and hope.

The free online event will take place at 6.30 on Tuesday 20th October.
https://www.actionduchenne.org/an-evening-with-action-duchenne/

Address

5th Floor, Mariner House 62 Prince Street
Bristol
BS14QD

Opening Hours

Monday 9am - 5pm
Tuesday 9am - 5pm
Wednesday 9am - 5pm
Thursday 9am - 5pm
Friday 9am - 5pm

Telephone

+447535498506

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