Research Strategy

Our latest research strategy published in 2017Read more

How do we choose research to fund?

We have a thorough peer review process, making sure that each project is investigated before we provide funding.Read more

Conference 2018 sponsors

Thank you to our Action Duchenne International Conference 2018 sponsors. The support of these organisations help us put on an event to benefit as many people as possible, in the international Duchenne muscular dystrophy community.Read more

Raise funds on Facebook

Facebook have made it easy for you and your connections to raise money online.Read more

Our vision

A world where people's lives are no longer limited by Duchenne and Becker muscular dystrophyRead more

Hear from previous conference attendees

Hear from families as they share their thoughts and feelings about the Conference.Read more

Conference registration

Register for the Action Duchenne International Conference 2018Read more

Three Nations walking challenge resources

Following in the footsteps of the Cwmbran depot in 2017, join the Three Nations Virgin Pulse walking challenge this summer 2018.Read more

Vivek Gohil - young person living with Duchenne

Watch Vivek Gohil chat to Peter Duffy at our International Conference 2017. Vivek is a co-editor with Peter on the media and campaigns channel Muscle Owl.Read more

Lizzie Deeble - Family Ambassador

Lizzie is a much loved part of the Action Duchenne family following her son Sebastian's diagnosis with Duchenne in 2016.Read more

Manjula Gohil - parent story

Manjula Gohil, mother of the wonderful Vivek, gave us an insight into her life and how things have changed since Vivek was diagnosed with Duchenne.Read more

GDPR updating personal information

Please let us know if the personal information that we hold about you needs to be corrected or updated.Read more

Shelley Simmonds

Fraser is the happiest boy you could ever wish to meet, we are proud to be his mummy and daddy. His sister is amazingly kind-hearted and gentle with him, he could not ask for a more loving sibling. We live month by month and take things as they come, our mindset to life has changed and we appreciate every day. Nothing escapes us, we take nothing for granted.Read more

Adam - Taekwondo Champ!

Adam, who started Taekwondo when he was six years old, has worked his way through each of the belts, despite his condition deteriorating. Adam regularly attends Dorset Marital Arts club with a smile on his face.Read more

Linda Smith - Grandparent story

Linda is Nana to 5 grandchildren, including Samson who is 5 and lives with Duchenne.Read more

Mitch Coles - "Living my life the way I want to live it"

Mitch Coles studied Graphic Design at University and now lives with his partner and young daughter. Mitch took part in a session at the Action Duchenne International Conference 2017 and we are delighted to share his story with you.Read more

Holidays & experiences

Here you will find a list of organisations and trusts that offer support and advice for holidays, experiences and most of all fun!Read more

Privacy policy

PRIVACY POLICY - We are committed to safeguarding the privacy of our website visitors and service users; in this policy we explain how we will handle your personal data.Read more

TSB volunteer at Great British Beer Festival – case study

"They played to each other’s strengths and this meant that they were able to collect money and raise awareness effectively"Read more

Angela Stringer - being a carrier of Duchenne

Angela is a long standing staff member of Action Duchenne, The DMD Registry Curator, Patient Advocate, Eupati Fellow and general font of knowledge!Read more

Potential therapies

Due to the complexity of Duchenne, there are many potential therapies which could help treat the condition.Read more

Takin' Charge

Takin’ Charge was Action Duchenne’s Lottery-funded Transition to Adulthood Project for young people with Duchenne aged 14 – 19 years. We are now working on a follow up project for 2018.Read more