These Emmerdale Stars are Raising Awareness For an Incurable Condition
Ahead of this year's Cure Usher Ball, hosted by Emmerdale stars Mark Jordon and Laura Norton, we hear more about the Gateshead-based charity Cure Usher Syndrome
Following the success of the inaugural Cure Usher Ball held in Manchester last year, Laura and Mark decided to bring the ball to Laura’s home turf, Newcastle. Both parents are determined to raise the much-needed funds and awareness to find a cure for Usher Syndrome, and they are patrons and trustees for Cure Usher Syndrome.
‘Usher Syndrome is a rare genetic condition that is the leading cause of dual-sensory loss (which is deafness and blindness), and in some even more rare cases it causes balance problems,’ explains Laura. ‘There are a few different types, and there’s variables within that. Deafness is normally permanent and from birth, and the vision loss tends to start from the age of 10 or sometimes after that, and is progressive. At the moment both of our children are affected by hearing loss, and they both wear hearing aids and have full access to speech and sound with them. They’re absolutely smashing life in the face of adversity.’
‘I think, like any parent, when we were first told of the diagnosis, it felt like there was a weight and a responsibility and we were scared as to what was required from us,’ Mark admits. ‘We’re just normal parents to two wonderful kids who just so happen to have a few extra things that we need to assist them with, and landmarks that we need to get to to make sure they’re full accessible to their speech and sound.’
It’s important that Jesse and Ronnie are prepped for if and when vision loss presents itself. ‘Hopefully we’ve still got a bit of time yet but it’s a bit of a race against the clock, everything we’re doing,’ says Laura. ‘It’s like every second counts because if the vision loss starts, we need to try and stop it as soon as it starts so they can hang on to everything they’ve got left.’
Jo Milne, the founder of Cure Usher Syndrome, got in touch with Mark and Laura and they realised that they were in a position in which they could help in a way that others can’t because of their profile and connections. ‘[We’re] very passionate about the charity, and we also want to find a cure for our children, and now everyone else living with the condition,’ says Laura.
‘The charity has been going for a long time and they’re learning how to expand and to grow, and people rely on their involvement within the community,’ says Mark. ‘Jo has worked so hard opening doors and it doesn’t matter who steps through but us being involved now means we have an opportunity to somehow step into rooms. They’re making amazing steps forward and who knows what else we can achieve together?’
Spreading awareness of Usher Syndrome is important, and the charity continues to work on that. ‘The words Usher Syndrome are out there now,’ Laura says. ‘Knowledge is power and the more awareness you create the more likely you are to raise funds, which means we’re more likely to get closer to a treatment or a cure.’
The charity ball helps in spreading this awareness, whilst also encouraging donations to the cause. West Nautical and WATA are joint headline sponsors for the Cure Usher Ball taking place this year at The Hilton in Gateshead on Saturday 21st September. Businesses from across the region have come together to raise funds for a cure, including South Shields Marine School, the Bespoke Clinic, Hays Travel and Kenny Atkinson at Solstice.
West Nautical is a superyacht company with head offices in Newcastle. ‘Our clients are in very good positions in life and we can’t shy away from that, but what we are able to do is bring good clients with money to charity events,’ says MD Geoff Moore. ‘This is close to hearts in the North East, and [the charity is] really putting the syndrome on the map. Mark and Laura are so friendly and so open about it and it’s the fact that you feel like you can make a difference because we’re right at the beginning. It’s a really good opportunity for us to get on board and to help out in that the money is actually going to go somewhere to make a real difference. By putting some really big prizes in the auction, that’s going to raise a lot of money and will hopefully blow out the water what they’ve earned before. They’ll also put this on the map for what will hopefully be a big annual event that we can continue to support for years to come.’
WATA is a natural, low-calorie Geordie beverage brand. ‘We are delighted to sponsor the Cure Usher Ball for the second year running. It’s vital that we help spread the word and find a cure for Usher Syndrome,’ says director Matthew Barron. ‘We thought that it was a unique opportunity for a company from the North to get involved in such a great charity, especially with Laura being from the North as well. It’s a great feeling of accomplishment from both sides to be able to support a close-hearted charity.’
‘We’ve got great support here in the North East,’ Mark adds. ‘Laura and Jo are from here and the love and support for this weekend’s ball is clearly going to last way beyond this weekend. It’s very clear that we should thank everybody because they will go and look for themselves about what Usher Syndrome is. There’s enough online that will lead you back to us if you ever want to reach out to us. If you’ve come across a diagnosis, we’re here to help. In the North East we have some great partners now and we’re very grateful for our time working and partnering with everybody in the North East.’
Usher Syndrome is a rare condition that affects around four to 17 in 100,000 people worldwide. For more information about future events and the charity, visit cureushersyndrome.com.
