Our sons, Owen and George, were diagnosed with Duchenne in 2017 and we set up Project GO to support Duchenne UK, an incredible charity that has one clear aim - to end Duchenne Muscular Dystrophy. DMD is a fatal and currently incurable genetic disease which causes all the muscles in the body to gradually weaken. This is because boys like ours are not able to produce dystrophin - an essential protein which protects every muscle each time it contracts. High dose steroids help to suppress the inflammation and muscle damage, but it is not treatment, and the side effects are heartbreaking.

Gene therapy research has made huge advances in recent years, but is still some way from an effective clinical treatment. In the meantime, novel steroid-alternative medications have been developed which are at least as effective as steroids, but without the severe associated side effects. Over the past year, with the support of Duchenne UK and the wider Duchenne community, Givinostat has been approved for use in Scotland and Owen has been able to have this additional treatment to steroids. Unfortunately it was not suitable for George, but he has now been changed over to Vamorolone (a novel steroid).

Unfortunately, these therapies are still not available to many families in the UK, and are not suitable for every boy. Duchenne UK's work continues to fund groundbreaking medical research, to accelerate access to treatments, and ensure everyone in the DMD community is given the care and support they need.

As an enthusiastic cyclist, I am painfully aware every time I get on the bike that my boys will never be able to cycle 300m, let alone take part in an event like the Dash, and cycle 300km from London to Paris. I have been privileged to take part in the last 2 Dashes, and together with Tom, Henry and Oliver, we have managed to raise more than £35,000 so far. I was overwhelmed by the support and feeling of solidarity during these rides, and I was able to persuade Kirsty to join us this year to experience this for herself, along Tom and Olivier once again, and debutants Adam and Chris, so Team Project GO is almost a peloton! Thank you so much for supporting our ride to Paris, and the essential work of Duchenne UK to improve lives and ultimately find a cure for all those affected by Duchenne.