Action Duchenne

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.

As comes to a close, we want to hear from you. Is there something you've done recently that's helped you to feel less ...
14/06/2026

As comes to a close, we want to hear from you.

Is there something you've done recently that's helped you to feel less overwhelmed by your caring responsibilities? Is there something you wish you'd known at the beginning of your caring journey ? If so, we'd love you to share it with us in the comments for . You never know when the thing you share might be exactly the thing someone needs to help them feel less alone.

Our support team are here wherever you are in your journey. From group counselling programmes, online support groups, 1-1 calls, webinars and in-person meet-ups, we have so many ways that we can help. Find out more:
https://www.actionduchenne.org/what-is-duchenne/supporting-you/

“Making contact with Action Duchenne provided a lifeline. They understood, they were living our experience too and they ...
13/06/2026

“Making contact with Action Duchenne provided a lifeline. They understood, they were living our experience too and they helped us find hope and positivity. They were there for us when we needed them and have introduced us to the Duchenne community through conferences and activities.” Ben, Duchenne Dad

The theme for is "Building Carer-Friendly Communities. We know through our work just how life-changing it is for carers to know they're not on this journey alone.

Become a Friend of Action Duchenne today so that we can be there for EVERY family, EVERY time.
https://www.actionduchenne.org/friends-of-action-duchenne/

Our support team are here wherever you are in your journey. From group counselling programmes, online support groups, 1-1 calls, webinars and in-person meet-ups, we have so many ways that we can help. Find out more:
https://www.actionduchenne.org/what-is-duchenne/supporting-you/

12/06/2026

Bungee for Action Duchenne

Lucy took on a Bungee jump at Battersea Park in London. Her cousin Artie, lives with Duchenne. Artie’s Dad Greg said

“The bungee went brilliantly! The weather was kind to us on the day, which made all the difference. Lucy was a complete hero! The organisation was excellent – it was easy to turn up and register on the day, and everything ran smoothly. Lucy had a wonderful experience, and we're all delighted with how it went.”

We have Bungee jumps available for July and August in London, Whitby, Salford, Bristol and Birmingham. Registration is £35 with a fundraising target of £250.

Enjoy a great day out this summer with your friends and family while supporting our life changing work. Sign up today! runforcharity.com/charity-landing-page/action-duchenne/bungee-jump-events

*When you share our posts, you are helping us reach a wider audience. So please share this post with your friends and family. Thank you for helping us to give hope to families and change lives. *

"Its really important to stay connected to who we are at our core. They were there before we became parents/carers and t...
11/06/2026

"Its really important to stay connected to who we are at our core. They were there before we became parents/carers and they need to be nurtured too. So much of what we do as parent/carers is about giving, but a loss of identity can mean a loss of self worth: you are important too." Kelly, AD Outreach Support Officer

The recording of our webinar on 'Carer Identity and Sustainability' from Tuesday is now available to watch on our website, along with all of the previous webinars in the series.
https://www.actionduchenne.org/webinar-series-2026-recording-carer-identity-and-sustainability/

Is there something you've done recently or are planning to do that's helped you to feel less overwhelmed by your caring responsibilities? Is there something you wish you'd known at the beginning? If so, we'd love you to share it with us in the comments for . What you share might be exactly the thing someone needs today to help them keep going.

"Action Duchenne gave us the tools to understand this diagnosis and the confidence to face the future. We’d recommend th...
11/06/2026

"Action Duchenne gave us the tools to understand this diagnosis and the confidence to face the future. We’d recommend the conference to any family – whether you’re just starting out or have been on the journey a while. You’ll laugh, cry, connect, and leave stronger. We always do."

During National Carers Week 2025 where the theme is 'Building Carer Friendly Communities', we want to remind you that our Community Summit (previously known as International Conference) is a place where parents and carers can find understanding, community and support.

Registration for our 2026 event on 13th and 14th November will open next week - make sure you are signed up to our monthly newsletter to get all the details.
http://eepurl.com/dvCnvb

If you’d like more information about any of our support services or you’d like to talk to a member of our support team, please get in touch with us on [email protected] or 07535498506 and find out more about our support services on our website:
https://www.actionduchenne.org/support/

The theme for Carers Week 2026 is 'Building Carer Friendly Communities' which is a huge part of our work here at Action ...
10/06/2026

The theme for Carers Week 2026 is 'Building Carer Friendly Communities' which is a huge part of our work here at Action Duchenne.
Our Online Group Counselling programmes are a safe space to talk openly with other parent carers in sessions lead by a professional counsellor. You'll have the chance to explore issues such as anticipatory grief, anxiety about the future and the impact of a Duchenne diagnosis and caring responsibilities on the other relationships in your life.

We are excited to announce that our next Online Group Counselling Programmes are now open for registration.

Upcoming programmes (all programmes are 8 sessions):
* Tuesday 15th September 2026 , 10:00–11:30am
(For Parents/Carers of Primary-aged children)

* Thursday 19th November 2026, 7:00–8:30pm
(Fpr Parents/Carers of young people aged 12+ years)

* Thursday 21st January 2027 , 10:00–11:30am
(Cohort to be confirmed)

We know that finding time to care for yourself as a carer can feel impossible, but having a small window of time to do something that gives you the tools to navigate the rest of it, the space to express your feelings and a connection to a community to remind you that you're not alone might just be the best thing you could do for yourself AND for those you care for.

Register your interest:
https://www.actionduchenne.org/group-counselling-programme/

There are lots of ways that we can support you and your family. If you'd like one of our amazing Support Team to get in touch to talk about how we can help, fill in the form on our website and we'll get back to you. You don't have to do this alone and we are all stronger together.
https://www.actionduchenne.org/support/


Today marks the start of National Carers Week in the UK, an annual campaign to raise awareness of caring, highlight the ...
08/06/2026

Today marks the start of National Carers Week in the UK, an annual campaign to raise awareness of caring, highlight the challenges unpaid carers face and recognise the contribution they make to families and communities throughout the UK.

We're starting this week off with our webinar held tomorrow 9th June at 6-7pm which will focus on 'Carer Identity and Sustainability'.

We're welcoming trained counsellor Mark Ashton and our very own AD Outreach Support Officer Kelly Molkenthin who will look at addressing and avoiding burnout, identity loss and isolation, giving yourself permission: why self-care is not selfish and who is in your support network and who is in your support network. Join us for an open discussion with others who understand in a safe space.

DATE: TUESDAY 9TH JUNE
TIME: 6-7PM
REGISTER:
https://app.etapestry.com/onlineforms/ActionDuchenne/Webinar7.html

Have you got a question about caring that you'd like us to answer? Even if you can't make the live webinar, the recording will be available to watch and we can get your question answered for you - just pop it into the comments below and we'll make sure we include it!

"What keeps me going through every tough moment is the thought of Oliver being proud of me and knowing that the money ra...
07/06/2026

"What keeps me going through every tough moment is the thought of Oliver being proud of me and knowing that the money raised helps him and other boys like him."
Alix, Action Duchenne Fundraiser

Whether it's a sky dive, a trek, a run, the 2027 London Marathon or your very own fundraising event, find out more about what you can do to make a difference for everyone living with Duchenne.
https://www.actionduchenne.org/make-a-real-difference-with-our-amazing-events-and-challenges/

Make sure you're signed up to our monthly newsletter to get all the latest updates about how you can get involved!
http://eepurl.com/dvCnvb

⛰️Three Peaks Information Evening with Judy from Global Adventure Challenges ⛰️Join us on Thursday 2nd July at 6pm to he...
06/06/2026

⛰️Three Peaks Information Evening with Judy from Global Adventure Challenges ⛰️

Join us on Thursday 2nd July at 6pm to hear more about an exciting opportunity to take part in the Three Peaks Challenge for Action Duchenne in 2026 and 2027.

Judy from Global Adventure Challenges will join us to tell you more about this amazing challenge and answer any questions you may have.

If you have ever thought about taking on this iconic challenge we would love for you to join us to learn all about how you can help us to take Action Duchenne to new heights!

Global Adventure Challenges

Register here https://us06web.zoom.us/meeting/register/8XnDs3xtRYu0Sg5po5aJjA

We are really excited to launch the first of our NEW groups for children and young people living with Duchenne.We’re int...
05/06/2026

We are really excited to launch the first of our NEW groups for children and young people living with Duchenne.

We’re introducing MIGHTY MINDS — a brand-new virtual group created especially for children living with Duchenne aged 11 and under. Siblings will also be welcome to join selected sessions, helping families enjoy activities together 💙

Mighty Minds is all about bringing children together in a relaxed, inclusive space where they can have fun, be creative, and build friendships.✨

Through virtual sessions, we’ll be hosting:
🎨 Creative craft activities
🎉 Seasonal quizzes & games
🍰 Fun themed sessions
🎭 Interactive challenges
😄 Lots of laughs and peer-to-peer fun

Our aim is to create a positive online community where boys feel connected, included, and confident — all from the comfort of home.

We can’t wait to begin this journey and meet all of our Mighty Minds members!

FIRST SESSION - MONDAY 6th July, 5-6pm
Join Mighty Minds for a fun-filled virtual cake decorating session to celebrate National Chocolate Day. Siblings are welcome to join the fun too!

Get ready for:
🎂 Creative summer cake decorating
😄 Laughs, teamwork & new friendships
🏆 Silly awards & show-and-tell moments
🍭 A relaxed, inclusive online space where every child can join in at their own pace

No baking skills needed — just imagination, creativity, and plenty of sprinkles\ Cakes and decorating supplies will be provided!

CLOSING DATE for registration is Wednesday 24th June in order to ensure we can post kits out to you in time!
Find out more and register here:
https://www.actionduchenne.org/children-and-young-people/

Make sure you sign up to our newsletter to get updates about our upcoming groups for 11-16 years olds and those aged 16 and over!
http://eepurl.com/dvCnvb

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

Website

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