Duchenne Dash 2025 · 16 May 2025 · Start fundraising for this event

Campaign by Duchenne UK (RCN 1147094)
Project GO is a Family & Friends Fund supporting Duchenne UK

Story

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-sparing medications have been developed which are at least as effective as steroids, but without the severe associated side effects. Unfortunately, they are still not currently available to most boys in the NHS. 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 acutely 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 was therefore privileged to take part in my first Dash last year, and together with best mates Tom and Henry we managed to raise more than £16,000. But the fight goes on, and so I am back for more this year, having persuaded Tom to dust off the bike once again, and also my brother-in-law Olivier, aka 'Uncle Grobby' to my boys, to keep me company on the ride to Olivier's home town - hopefully he won't get lost.

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.

Help Nick Ohly

Sharing this cause with your network could help raise up to 5x more in donations. Select a platform to make it happen:

You can also help by sharing this link on:

Donation summary

Total
£1,550.00
+ £387.50 Gift Aid
Online
£1,550.00
Offline
£0.00

Charities pay a small fee for our service. Learn more about fees