Q&A: Talking CUREUsher with its Vice Chair and Co-founder
Stephen White is co-founder of CUREUsher, which exists to support people living with Usher Syndrome and to influence policy changes. Our CEO, Keith Valentine, spoke to him in our latest podcast. Read the Q&A
What is CureUsher?
Keith Valentine, CEO of Fight for Sight/Vision Foundation: If you could start by telling us a bit about your journey, what the aspirations of CUREUsher are, and how it came together.
Stephen White, Vice Chair and Trustee of CUREUsher: It's born on the back of a sense of frustration and under-representation. The people who live with Usher Syndrome are quite adept at navigating many worlds and many scenarios.
They’re handed a tough gig for the most part.
Our co-founder, Jo Milne [Stephen's wife], was born with profound hearing loss and later developed retinitis pigmentosa.
Navigating the world with both of these conditions is quite tough. Jo found that many people across the public and professional worlds don’t really have a sense of what Usher syndrome is and how to approach it and support people. We established Cure Usher in late 2018 because of that frustration and the need to specifically direct awareness to Usher Syndrome.
Keith Valentine: I’d be interested to know what led to you and Jo forming an organisation to help support everyone with Usher’s, rather than just focusing on Jo’s condition.
Stephen White: Some people have an amount of human spirit that just overflows. Why do we do these things? I don’t know, I just care. We’re all human. We’re all the same. Zoom out, people.
On the train, we were delayed in Newcastle, and the train guard said, “There’s no way I’m letting this lady walk the full length of the train with her bags. Just wait here, and we’ll get this sorted out.”
He didn’t have to do that, but Jo had her mobility cane with red stripes, denoting hearing loss. The train guard might not have understood that, but she still cared enough to think, “No, I’m not going to let this woman do this. Let’s make this right.”
If you're given the opportunity to make a meaningful difference, why wouldn’t you?
“As an estimate, over 11,000 people in the UK have Usher Syndrome.”
Funding Sight Loss Research
KV: What has the response been from the community of people with Usher’s or the medical world?
SW: Many people have connected with us and said that we’re exactly what they want. Many people already have a great support network; it’s about awareness. People are living with this every day, and they’re okay. They have to be.
But they’d rather not be; they’d like to know someone’s doing something about it.
We can’t just conjure a magical cure-all, but we’re on our way to doing it. Trying to secure grants and funding for research from the never-ending void that is the pot of research money is tough. A mind-blowing 1.8%, I think, of the central government’s medical funding goes to sight loss, and then an even smaller percentage goes towards Usher Syndrome.
As an estimate, over 11,000 people in the UK have Usher Syndrome. They’re in society, doing jobs, just living. And they’re more than capable. They just need a bit of support.
What would a cure mean to people with Usher syndrome?
KV: There is no separation between wanting to fund research into curing sight loss conditions and funding social impact projects that help people get on with life while living with sight loss. What’s been your personal experience with that and CUREUsher?
SW: The name, CUREUsher, really shows what we’re after. Our experience, the feedback that we got from our consultations, was that people are fine; they’d just rather not be living with Usher Syndrome. They want someone to help, to do something about it.
KV: Talking with people who have degenerative eye conditions, the thought that it could one day just stop getting worse and remain in a steady state is also huge. I was just wondering, given that there are two processes of degeneration going on with Usher’s, how do you think a development like that would play out with the community?
SW: I absolutely think that would be huge for the community. Jo says that nearly every day: “If we could just stop it at this.” We’re both rapidly approaching our fifties. We’ve lived a life, we have all that experience, we’ve navigated through all this, and we have all those skills in place. That’s fine, if we could just stop it there, that would be great.
KV: I genuinely think sight loss has made me a better person, and I don’t think you get over the fact that it’s happening, I think you learn to live with it. It’s pushed me to recognise that I live within the context of a community and a family. I need to rely on people. I need to trust the public.
SW: You have to trust in the human spirit. When you get off the tube and off the train, people are going to see, appreciate, and think, okay, we’ll give this man just a little extra. And that’s fine; we’re lucky to live in a society that allows that.
Next Steps for CUREUsher
KV: This has been a really fascinating conversation for me, Stephen. Perhaps now you could talk briefly about what’s next for CUREUsher?
SW: The big thing is that we’ve just established the first all-party parliamentary group for Usher Syndrome. So we’ve got a little bit of a foot in the door now; the people there have the chance to change the way we live, change the policies. It’s beautiful, it’s been great, but there’s still a lot of work to do.
The comedian Henning Wehn does a little skit. In his routine about charities in the UK, he was quite shocked that they're a thing. There's no such thing in Germany as a charity, apparently. It is just sorted out. It's just done. Whereas over here, it is down to us to do it, which is good and bad in a way.
It’s like a big consultation. You’ve got people right there, like yourself and Jo, these people that live with this condition who are at the top, calling the shots. So now it’s time for those people to go to the very top, to the people making decisions, and to persuade them to further invest in genetic research at a central government level. And to raise awareness, tell people what this is. We have a voice, and it deserves to be heard. We’re a diverse community, and so far, it’s been crushingly marginalised.
We need an appetite for change. Right now there’s just support, and that’s very static. I find that really frustrating. So that’s what we’re trying to do at CUREUsher, we’re trying to push that forward. So I’d urge anyone reading this to go to the CUREUsher website and follow them on socials.
KV: Thank you, Stephen. If anyone’s going to find a route to change for Usher’s it’s you, I can hear it in your voice.