Nick and Emily Crossley
Duchenne Dash 2023
Fundraising for Duchenne UK
Story
When we set up the Duchenne Dash a decade ago, I never, ever had any intention of actually doing it ! I was happy to watch my amazing husband cycle 300km on zero hours sleep in 24 hours, and cheer his arrival in Paris at the end.
But last year - for our 10th race - I finally did it. And I made it - all 300 kilometres!
I swore I’d never do it again. But, much like childbirth, months later I’d forgotten how horrific the experience was. And so I signed up to do it again.
Why am I doing it. I’m doing it for my son, Eli. He’s incredible. And he does not let Duchenne define him. And so I’m doing it to keep fighting for him so that Duchenne does not define him but that he can live the fullest life and get access to treatments when they come.
Thanks to support of people like you, our charity, Duchenne UK has raised more than £17 million in those ten years. And we’re doing amazing work.
We were told by doctors that gene therapy wouldn’t happen in our lifetime. Well, we invested $5milion dollars in US biotech, and now they and 4 other companies are testing gene therapy on boys with Duchene. In fact last year, the first boy in the UK was dosed in November, thanks to a network of clinical trial sites that we set up and fund – and an innovative patient tracker that we fund, that matches patients with clinical trials they can take part in.
Ten years ago, we funded a Phase I trial of a promising medicine called Vamorolone. Last year the company proved in a Phase II trial that the drug works and they are now working with the regulators to get that drug approved in the UK: What’s more they’re trying to fast track this through a scheme called the Early Access to Medicines, a scheme that Alex and I lobbied for, and that is now enshrined in law – that enables patients to access mediciensfare more quickly than they could have done 5 years ago.
But we still have lots to do.
So please, I hate asking for a second year in a row. But I you can, please sponsor Nick and I. Help us make the pain worthwhile. And help us to end Duchenne.
Emily x
