In the pieces below, patients and parents have written about different aspects of their experience with Duchenne muscular dystrophy. If you would like to share your experiences to help others, then please do contact us. The words below are directly from patients and parents and therefore do not necessarily represent the charity's views on any of the matters discussed.
Emily has written a blog about the devastation when trials fail and why many families find out about clinical trials through social media Read more
It is estimated around 1 in every 50 million girls are affected by Duchenne. Feriel, a 26 year old woman living with Duchenne, has written us a short blog about her experiences Read more
Decipha work face to face with families and offer a range of assessments and valuable support to boys with DMD and their families. Read more
At the beginning of May, Lisa Kuhwald attended the Duchenne Caregivers’ Masterclass in Madrid on behalf of Duchenne UK. Read more
Vici Richardson has written a blog about the adult research workshop we hosted on Friday 19th of November in Newcastle with DMD Pathfinders. Read more
Sejal Thakrar from Smile with Shiv has written a blog discussing the many things they considered when starting their son, Shiv, on heart medication. Sejal highlights the importance of learning as much as possible about Duchenne. Read more
Alex is often asked whether Jack is taking part in a clinical trial, and if so, which one. Jack has recently enrolled into his fifth clinical trial. Read more
Robyn Pete - the day we took a hit that reshaped our lives. We didn't see it coming. Read more
Jon Hastie is 36 and lives with Duchenne Read more
Luca's inspirational speech on living life to the full Read more
Lisa Kuwahld - raising money & awareness, fighting for her son to enjoy the future with him. Read more
Becky Burnett - how we have worked hard to find ways to keep our son happy, socially included and resilient. Read more