Latest news with #Prader-WilliSyndrome
STV News
a day ago
- Sport
- STV News
Boy, 8, with rare genetic condition launches 2,500km relay race across the UK
An eight-year-old boy has become the first child to pass the baton from the start line in Glasgow to kickstart the Relay Your Way race. Wolfe Gorton boarded a unique fibreglass boat at Pinkston Water sports Centre accompanied by safety swimmers before passing the baton to paddleboarders, and then on to the shore where it began its journey through Scotland, England, and Wales, finishing up in Windsor. Wolfe, one of 9,000 young people taking part in the relay race, has cerebral palsy and Prader-Willi Syndrome, a rare genetic syndrome that causes decreased muscle tone and some delayed milestones. Cerebra, the charity organising the race said that the relay has been designed to promote inclusivity in sports, with wheelchair users, adapted surfers, and frame runners all taking part. 'All children should have the right to put themselves in a challenging situation to enjoy adventures and enjoy sports,' said Jess Camburn-Rahmani, CEO at Cerebra. 'Every child needs to discover what brings them joy- so many times children are told its too risky or not made for them if they have a disability and we don't think that's fair or right,' she added. STV News The relay has been designed to promote inclusivity in sports, with wheelchair users, adapted surfers, and frame runners all taking part. Over 33 days the baton will journey 2,500km through towns and cities, bringing together thousands of people in a celebration of accessibility, adventure and inclusion. Wolfe's mother Emily Gorton said: 'Wolfe is really excited to go on what he will call a pirate boat, because he's obsessed with them. 'There needs to be a lot more awareness and thought put into how to make sport truly inclusive.'' Disability rights advocate and sportswoman, Dr Julie McElroy, was also in attendance. She said: 'Sport has helped me grow physically, mentally, and emotionally. 'That's why Relay Your Way is so powerful – it isn't just a relay, it's an action statement. 'It celebrates the 1.5 million young people in the UK with disabilities and reminds the world that every child deserves the chance to play, move, and thrive.' The Relay Your Way baton was designed by the Cerebra Innovation Centre to be easily carried by wheelchair users, adapted surfers, and frame runners and will be passed between participants over 301 stages to the finish line at Parallel Festival of Inclusivity in Windsor on July 6. Get all the latest news from around the country Follow STV News Scan the QR code on your mobile device for all the latest news from around the country
Irish Independent
2 days ago
- General
- Irish Independent
Family of Wicklow girl (8) with rare genetic condition overwhelmed by support
Stella is the daughter of Anna and Conor Leonard of Moneystown and shortly after her birth she was diagnosed with Prader-Willi Syndrome (PWS), which is a genetic condition caused by missing or faulty genes on chromosome 15 and is characterised by a range of physical, cognitive, and behavioural symptoms. 'Team Stella' organised a fundraising coffee morning and raffle, which took place on Sunday in Moneystown Community Hall, which ended up raising over €7,500 for the Prader-Willi Syndrome Association of Ireland. Stella's mother Anna said: 'Words cannot express how much everyone's kindness and support mean to us. From the bottom of our hearts, thank you to everyone who donated, helped, and joined us on the day. 'Stella hasn't stopped talking about it, and we're so grateful for everything. It went beyond what we could have imagined. What started as a small community gathering turned into an amazing display of support, love, and generosity.' The morning was filled with fruit, cakes and bakes, while the talented Esther from 'The Risky Chicks' also put on a special performance. All the kids in attendance had a blast with the play corner—painting stones, tattoos and playing games, while the sweet and popcorn shop proved a massive hit. Anna stated: 'Possibly the most cherished part of the morning was Stella's calm corner, where people could take a moment to relax. Stella truly made the most of this space.' She added: 'What made this day even more special was the incredible turnout. We never expected such a large gathering, and it was heartening to see so many people coming together. The community spirit was truly infectious. We were especially moved by the support from Stella's friends with PWS, who travelled from Kildare, Greystones, and Wicklow just to be with us.' 'Team Stella' also offers a huge thanks to everyone who ensured the event ran smoothly, whether it was selling raffle tickets, assisting with the clean up, or lending a hand wherever needed. 'We'd also like to express our heartfelt thanks to the Timmons and Leonard families for their incredible support, and to principal Ms Morris and deputy principal Ms Durston, of Moneystown National School, for looking after everyone with teas and coffees, and a special thank you to Bruno, our teddy mascot, for keeping everyone entertained and spreading even more fun throughout the day,' said Anna. Local businesses also generously donated some great raffle prizes, which ensured that everyone left the coffee morning with a smile on their face.
Glasgow Times
3 days ago
- Sport
- Glasgow Times
Young boy launching UK's 'most inclusive relay' in Glasgow
Eight-year-old Wolfe Gorton is the first child to pass the baton for Cerebra's 2,500km Relay Your Way event on June 3. Cerebra, the UK charity dedicated to helping children with neurological conditions, designed the relay as a celebration of accessibility and inclusivity in sport. Wolfe and his mum Emily Gorton (Image: Supplied) Read more: 2,500km relay to kick off in Glasgow with special help from Rangers For 33 days, the baton will be carried across towns and cities, uniting thousands of participants. This year, the event begins at Glasgow's Pinkston Watersports Centre, with Wolfe, who has cerebral palsy and Prader-Willi Syndrome, launching the relay. His condition, a rare genetic syndrome, causes decreased muscle tone and some delayed milestones. Sport has long been a huge part of Wolfe's life, with a fondness for swimming sparked by early pool experiences as part of a water babies group. He also enjoys horse riding, having started hippotherapy at just 14 months old. Wolfe enjoys horse riding (Image: Supplied) Emily Gorton, Wolfe's mum, said: "Seeing Wolfe take the lead as the first participant of Cerebra's Relay Your Way is really important for us as his parents. "There needs to be a lot more awareness and thought put into how to make sport truly inclusive. "Wolfe is really excited to go on what he will call a pirate boat because he's obsessed with them." The baton, designed by the Cerebra Innovation Centre to be easily carried by wheelchair users, adapted surfers, and frame runners, will be passed between participants over 301 stages to the finish line at the Parallel Festival of Inclusivity in Windsor on July 6. Dr Julie McElroy, a trailblazer for disability rights and accomplished sportswoman, will attend the start line of the relay and carry the baton for a distance to its first stop at Dunard Primary School. She said: 'My relationship with sport began at an early age thanks to my parents' determination that I would have the same opportunities in life as my older brother and sister. "Sport has helped me grow physically, mentally, and emotionally — a reminder of its power to heal, connect, and transform lives. "That's why Relay Your Way is so powerful. "It isn't just a relay, it's an action statement. "It celebrates the 1.5 million young people in the UK with disabilities and reminds the world that every child deserves the chance to play, move, and thrive. 'Events like this don't just raise awareness; they create real opportunity. "I'm living proof of what can happen when we believe in potential over limitation and I hope this relay empowers more young people to find their way into sport, just like I did.' Jess Camburn-Rahmani, chief executive at Cerebra (Image: Supplied) Read more: Scotland's Home of the Year star to run Glasgow 10k in 'daft' footwear Jess Camburn-Rahmani, chief executive at Cerebra, said: "Cerebra is incredibly proud to be celebrating the power of sport to bring people of all abilities together with Relay Your Way and lead this nationwide movement for inclusion and change. 'Participation in sport should be equally available to everyone, and this relay is a powerful statement that no child should ever feel left out. "Whether you take part, cheer from the sidelines, or donate, you'll be helping to create a world where all young people are fully included, supported, and celebrated. "We wish the best of luck to everyone taking part." More information about the event can be found on the Relay Your Way website.
Daily Mirror
4 days ago
- Health
- Daily Mirror
UK landmarks glow orange to raise awareness of rare genetic condition
London's Tower 42, Cardiff Castle, The Mersey Gateway Bridge and Green's Windmill in Nottingham were among the buildings to 'Glow Orange' to highlight Prader-Willi Syndrome (PWS) This weekend saw some of the UK's most iconic landmarks bathed in light to raise awareness for a rare complex genetic condition affecting around 2,000 people in the UK. The illumination lasted from sunset on Friday until sunrise Saturday morning, across 17 different landmarks, marking the conclusion of Prader-Willi Awareness month in May. Landmarks such as London's Tower 42, Cardiff Castle, The Mersey Gateway Bridge and Green's Windmill in Nottingham were among those glowing orange to spotlight Prader-Willi Syndrome (PWS). Southend Civic Centre, Worcester's Guild Hall and Edinburgh's Camera Obscura and World of Illusions also shone bright in an orange hue. Nigel Birrell, CEO of Lottoland, the company behind the activation and a proud charity partner, expressed: "The Prader-Willi Syndrome Association (PWSA UK) is a cause that's very personal to me, and I've been a long-time admirer of the incredible work they carry out. "It's been truly inspiring to witness so many landmarks across the country light up in support of PWS awareness - the level of engagement has really touched us." For the second year running, PWSA UK and FPWR UK (Foundation for Prader-Willi Research UK) have collaborated to plan and organise several events, one of which was held at the House of Lords on 14th May. Held in the capital city, it featured speeches from both charities and members of the PWS community who shared their experiences of living with the condition. The event also offered information to help people understand the complexities of PWS. The objective of the events was to raise awareness and understanding of the rare condition, which triggers an overpowering and uncontrollable urge to eat that can be life-limiting, as well as causing learning and physical difficulties. They hope that a better understanding will lead to more effective support which will save money and lives. The charities are also collectively utilising the disorder's initials to help people identify key issues associated with the condition: P - Persistent hunger: can lead to life-threatening obesity. W - Warning signs absent: typical health warning signs are absent for people with PWS. S – Specialist Care: people with the condition need round-the-clock supervision. Jackie Lodge from PWSA UK and Catherine Shaw from FPWR UK released a joint statement. They said: "We're delighted that PWSA UK and FPWR UK have come together again for PWS month to raise awareness for such an important cause." "We want to generate as much awareness about PWS as possible and by these buildings and landmarks lighting up orange it is a fantastic way to do so, on top of the other events that have taken place this month. We're really grateful to these buildings for shining a light on this important cause."
Scottish Sun
6 days ago
- Health
- Scottish Sun
UK landmarks glow orange to raise awareness of rare genetic condition
The condition causes an overwhelming and uncontrollable drive to eat that can be life-limiting GLOW UP UK landmarks glow orange to raise awareness of rare genetic condition Some of the UK's most iconic landmarks were glowing orange last night - to raise awareness of a rare complex genetic condition that affects approximately 2,000 people in the UK. London's Tower 42, Cardiff Castle, The Mersey Gateway Bridge and Green's Windmill in Nottingham were among the buildings to 'Glow Orange' to highlight Prader-Willi Syndrome (PWS). 4 A number of buildings across the UK were lit up orange last night to raise awarness for those affected by Prader-Willi Syndrome (PWS), including Cardiff Castle pictured here Credit: Matthew Horwood/PinPep 4 The Mersey Gateway Bridge was also visibly orange last night to mark the end of PWS awareness month Credit: Phil Oldham/PinPep 4 Green's Windmill in Nottingham lit up in orange last night Credit: James Linsell-Clark/PinPep Southend Civic Centre, Worcester's Guild Hall and Edinburgh's Camera Obscura and World of Illusions were also illuminated in an orange. The glow up lasted from sundown until sunrise, across 17 different landmarks, to mark the end of Prader-Willi Awareness month in May. Nigel Birrell, CEO of which was behind the activation and a proud charity partner with a scratchcard dedicated to the cause said: 'The Prader-Willi Syndrome Association (PWSA UK) is a cause that's very personal to me, and I've been a long-time admirer of the incredible work they carry out. "It's been truly inspiring to witness so many landmarks across the country light up in support of PWS awareness - the level of engagement has really touched us.' PWSA UK and FPWR UK (Foundation for Prader-Willi Research UK) have come together for a second year to plan and organise several events, which included one at the House of Lords on May 14th. Hosted in the capital city, it included speeches from both charities and the PWS community who shared their experience of living with the condition. The event also provided information to help people understand the complexities of PWS – the hope being that a better understanding will lead to more effective support which will save money and lives. The aim of the various events was to generate awareness and understanding of this rare condition which causes an overwhelming and uncontrollable drive to eat that can be life-limiting, as well as learning and physical difficulties. Together the charities are using the condition's initials to help people recognise key issues associated with the disorder. P - Persistent hunger which can lead to life-threatening obesity. The full list of lit-up buildings Tower 42 Bradford City Hall Bridport Town Hall Clock St Edmundsbury Cathedral Gateshead Millennium Bridge The Mersey Gateway Bridge Green's Windmill Southend Civic Centre Camera Obscura and World of Illusions The Guild Hall Worcester Cardiff Castle Moorish Castle (Gibraltar) Ranfurly House Dungannon Burnavon Cookstown Bridewell Magherafelt Portsmouth Spinnaker Tower Titan Crane, Scotland W - Warning signs absent, typical health warning signs are absent for people with PWS. S – Specialist Care - people with the condition need specialist care, with round-the-clock supervision. Jackie Lodge of PWSA UK and Catherine Shaw of FPWR UK issued a joint statement. They said: 'We're delighted that PWSA UK and FPWR UK have come together again for PWS month to raise awareness for such an important cause. 'We want to generate as much awareness about PWS as possible and by these buildings and landmarks lighting up orange it is a fantastic way to do so, on top of the other events that have taken place this month. 'We're really grateful to these buildings for shining a light on this important cause.'
