Journalist Mike Ramsden is a long-time supporter of Duchenne UK and veteran Duchenne Dasher. He announced on the radio a few weeks ago that our Co-founder and CEO, Emily Reuben, was his person of the year on Riz Lateef’s show on BBC Radio London.
We caught up with Mike to hear why he nominated Emily.
“Recently, I was a guest on the BBC Radio London breakfast show, where I was asked to give my opinion on what’s going on in the news. One of the topics for discussion was Time magazine’s Person of the Year (spoiler: in 2023, it’s Taylor Swift). I was asked who my ‘person of the year’ would be. The answer was easy; Emily Reuben, co-founder and CEO of Duchenne UK. I’m not the only one who recognises her contribution to trying to beat Duchenne muscular dystrophy (DMD). Earlier in 2023, she was awarded an OBE along with the charity’s other co-founder, Alex Johnson. Both are ambitious and relentless in their vision of how they can improve the lives of children with DMD.”
“You’ll see what I mean when you look at their record of achievement. Both were told their toddler children would lose the ability to walk by their teenage years, as their muscles wasted away. But they did not accept the status quo. Emily was told gene therapy wouldn’t be available during her child’s life. Yet, 11 years later, the first boy with DMD was dosed in a gene therapy trial, because of the charity’s support for a promising drug during its difficult experimental stage. Emily and Alex changed the law so that certain drug trials could run in sequence, rather than concurrently, to try to get treatments to their boys as quickly as possible. They’ve been instrumental in supporting trials of the first ever drug designed specifically for people with DMD, which is about to go on sale.”
“They’re driving a project to create a commercially viable powered exo-skeleton, to keep DMD children’s upper bodies mobile for as long as possible, boosting their independence. They found that drug trials weren’t being filled, because there was no network of DMD families and clinicians, so created one. They’ve got patient groups and medics to agree on the best treatment for DMD children, and made that available online for the first time, so all involved know the standards of care that should be provided. They’ve raised nearly £20 million, and created a community of charities and supporters who can choose the projects their funding supports.”
“One of those achievements, over a decade, would be a huge result, while caring for your son and your family and dealing with the intense, heart-breaking difficulties of the condition. But to achieve that pace and scale of change leaves me in awe. It’s why I am so pleased Emily and Alex were given their royal award this year. They have changed the lives of thousands of children around the world for the better, but will not stop until DMD is ended for good. Because of their achievements, that is closer than ever.”
Mike made the announcement on Riz Lateef’s show on BBC Radio London.