£1 million to fund the next three years of DMD Care

To mark Rare Disease Day 2024 Alex and the Joining Jack team took part in a series of collaborative meetings: the first to address the work we are doing in harnessing technology to help disability and the second was to continue to drive forward our amazing DMD Care UK programme, to ensure boys get the best care, no matter where they live.

And alongside our incredible charity partners Duchenne UK and The Duchenne Research Fund we are now pledging £1 million to fund the next three years of DMD Care UK. And to fully integrate it into our work on the DMD Hub, our clinical trial network, and our research programmes - thanks to YOU!

Our co-founder Alex Johnson, Jack's mum, said: "Twelve years ago, Emily and I knew nothing of DMD, of medical research, of fundraising, or of the challenges in drug development.

Yet here we are today with a world vastly different, from the one that we entered when our sons were diagnosed.

Today, we are part of the first ever conference, New Horizons, bringing together families, industry, and clinicians, to discuss the best care, and the exciting research happening in Duchenne today."

Alongside Duchenne UK, Joining Jack will also be part of a big new area of work: DUCHENNE UK Data – a state of the art data collection platform which will launch next year with the aim of enabling participation in clinical trials, driving better clinical care through access to guidance, education and patient insights from their own data, support the development and evaluation of new treatments, and track disease progression.

Alex added: "There has never been a more exciting time for the DMD community. Treatments are coming, and we will never, ever stop fighting, thanks so much to everyone for supporting and being part of that."