Latest news with #TuberousSclerosisAssociation
Yahoo
22-05-2025
- Entertainment
- Yahoo
Tuberous Sclerosis garden wins gold at flower show
A garden that was designed to raise awareness for the Tuberous Sclerosis Association has won a gold medal at the RHS Chelsea Flower Show. Jen Donnelly and Catherine Gibbon volunteer at Amersham Hospital in Buckinghamshire and rejuvenate the gardens used by staff and patients. Their "Room to Breathe" garden was inspired by Ms Donnelly's experiences waiting in hospitals for her 15-year-old son Alex, who has Tuberous Sclerosis Complex, to have surgery. After the flower show, the garden will be moved to Amersham Hospital, which will become its permanent home. Tuberous sclerosis is a rare genetic condition that causes mainly benign tumours to develop in different parts of the body, such as the brain, heart, and lungs. Ms Donnelly recalled: "My memory is sitting on a plastic chair in a clinical corridor waiting for news of his operations. "I thought, wouldn't it have been amazing to have a little space outside space. I could've gone to [it] to escape, have a moment to yourself. "So we've created this little corner of a hospital courtyard where a parent could go to and have that moment to themselves." The design won its trophy in the Balcony and Container Garden category. It was created with planting containers off the ground, at various heights, in a 12 square-meter space. A "cocoon-like hanging chair" was included, which Ms Gibbon said evoked the feeling of having "a nice hug you really need when you're in hospital". During the show, the garden was visited by celebrities such as actor Sir David Suchet, Strictly Come Dancing star Nadiya Bychkova and singer Alexandra Burke. Ms Donnelly said: "David Suchet was so lovely and spent so much time with us, talking to the public about why it was important to raise awareness about the condition. The Poirot actor has regularly supported the charity in public. Follow Beds, Herts and Bucks news on BBC Sounds, Facebook, Instagram and X. Designer creates final garden for Chelsea Flower Show Nursery wins fifth gold at Chelsea Flower Show Royals and Beckham attend Chelsea Flower Show The Tuberous Sclerosis Association
Yahoo
27-04-2025
- Entertainment
- Yahoo
Family fighting for awareness of son's rare condition with games day
A family whose son is battling a rare condition hosted a quirky board game day to raise money and awareness. Richard Cooper, from Weymouth, held an Alien-themed games day where families could play classic boardgames and play with Funko figures, to raise money for Tuberous Sclerosis Association. The event was held at the Dry Dock on St Thomas Street at the weekend, with the family there to welcome players. As previously reported, Richard along with his partner Claire Garry decided to raise awareness for their son's condition, Tuberous Sclerosis Complex, which causes him to have upwards of 15 seizures a day and grow tumours uncontrollably through his body. (Image: Claire Garry) TSC is defined as a rare genetic condition that causes tumours to develop on vital organs such as the brain, skin, heart, and lungs. Some of the tumours can be cancerous. When Richard and Claire found out their son's heart had been affected while Claire was still pregnant, they were left worried about how much time they would have with their precious son. Claire said: 'It sticks in my mind, and it hit home the seriousness of what our little boy could have." At the Alien-themed event which coincided with Alien Day, a global celebration of the Alien film franchise, Richard said families had been in and enjoyed the selection of games on offer, from Jumanji, Indiana Jones and PACMAN. Richard said: 'Families have really enjoyed it. They took a fancy to the Alien boardgame and the Funko characters.' At midday the event had raised around £35 in person and more than £100 on Richard's JustGiving page. (Image: Claire Garry) As well as the support from donations that will greatly help the TSA charity fund research into the complex, Richard said the day had also united families in Weymouth who have children with TSC. He said: 'There have been a few families that have contacted me saying they'll come down as their kids are affected by it.' When the couple received the news that their unborn son would have the rare condition, the couple were devastated. It is typically a hereditary condition but has affected their son by freak chance. Richard said: 'At the time it felt like a cruel joke. But he really gets by. He loves his music. He's loves Razorlight and Torn by Natalie Imbruglia. There are some songs that he will just stop to.' Richard hopes the fundraiser can become an annual event to raise money for the great cause. In the future, he hopes to team up with Comicon events in Weymouth to target a bigger audience. Donations can still be made through Richards Just Giving page
BBC News
22-03-2025
- Health
- BBC News
Make a Difference Awards: Cornwall fundraiser, nine, hopes to inspire others
A nine-year-old boy who won a BBC Make a Difference Award for his fundraising wants to inspire more people to help said it was "absolutely impeccable" to win the fundraising award in 2024 for his efforts to raise money and awareness around health conditions affecting children and young people. He was inspired by his six-year-old sister Frankie who has epilepsy and tuberous sclerosis, which causes benign tumours on her brain, heart and kidneys."My aim is to get the whole world to fundraise so they can all be cured, no matter what they are diagnosed with," he said. The youngster, from north Cornwall, is encouraging people to nominate others for this year's far he has raised £9,000 through sports challenges for the Tuberous Sclerosis Association, the Daisy Garland charity for children with drug-resistant epilepsy, and the Epilepsy is competing in a Pretty Muddy obstacle event with his football team to raise money for Cancer said: "I would wish to try and help everyone who has a disease or mental health issues to try and cure them."Nominations for this year's Make A Difference awards are open until 17:00 GMT on 31 winners will be announced at a ceremony in September.
