World Duchenne Awareness Day takes place on Sunday 7 September, and this year’s global theme is ‘Family: The Heart of Care’.

Duchenne families are at the heart of everything. They are the driving force for better care, new research, access to new treatments, the development of innovative technology. They are working tirelessly for greater awareness and understanding of Duchenne muscular dystrophy (DMD), and respect for people with it and their families. 

This World Duchenne Awareness Day, we are proud to celebrate how Duchenne families are transforming their rare reality.

The Saul family

When Ryan and Jayne Saul received the life-changing news that their son Henry had DMD, they channelled their energy into hope and action – creating the Family and Friends Fund: Henry’s Hills, to raise money for vital research.

Since then, Henry – now 11 – has become a shining example of resilience and leadership, proudly serving as Head Boy of his junior school. Alongside his family and friends, he’s taken on incredible fundraising challenges: climbing Pen-Y-Fan and Snowdon, trekking the Jurassic Coast, hosting unforgettable gala events, and most recently, completing a 10-mile bike ride through the New Forest.

Thanks to their unwavering dedication, Henry’s Hills has raised over £129,000 to help accelerate research and bring hope to families affected by DMD.

Jayne reflects on their journey: “When we were first told about Henry’s diagnosis, we had never even heard of DMD. We didn’t know what the future held—but we knew we wanted to do something positive. That’s why we started fundraising for Duchenne UK, an incredible charity with one clear mission: to end Duchenne. Every pound we’ve raised has gone towards groundbreaking projects—from exploring new therapies and funding clinical trials to developing the technology that could change lives.”

The Clarke family 

When Alex and Lisa Clarke learned that their son Ben had DMD, they turned heartbreak into hope by launching the Family and Friends Fund: Ben vs Duchenne.

Now 12 years old, Ben is thriving—surrounded by love, laughter, and exceptional care. And thanks to the tireless efforts of Ben vs Duchenne, tens of thousands of pounds have been raised to improve care for everyone affected by DMD across the UK.

Alex shares why they chose to support DMD Care UK through their fund: “With Ben’s rare mutation, many of the current drug trials won’t directly help him. That’s why we wanted to make a difference that reaches beyond our family. Supporting DMD Care UK means driving real, lasting change for the entire Duchenne community—and that’s the most meaningful way we can honour every donation made through Ben vs Duchenne.”

The Harvey family 

When Mhairi and Michael Harvey discovered that their 7-year-old son Michael, who has DMD, couldn’t access the new treatment givinostat—despite it being offered to the NHS for free—they knew they had a battle ahead.

In January, they attended our Time is Muscle campaign parliamentary event in Westminster to lobby MPs, including their own representative Blair McDougall and Wes Streeting MP, the Secretary of State for Health and Social Care. There was real hope that the event would lead to swift access to givinostat. But that hope quickly faded. Nearly all eligible Hospital Trusts reported they lacked the resources to deliver the treatment.

Determined not to give up, Mhairi and Michael, who live in Scotland, joined forces with other families and leading Scottish lawyer Aamer Anwar, and took their campaign directly to Scotland’s Health Minister, Neil Gray. Their efforts paid off. Neil Gray personally intervened, and now every eligible person with DMD in Scotland is receiving givinostat.

Following their victory, Mhairi said: “It’s hard to put into words how we feel about having access to givinostat. A rollercoaster it has been, but not a fun one that I’d like to repeat.”

Would you like to set up a Family and Friends Fund or get involved with our Time is Muscle campaign?