News & blog News Fundraising heroes April 2024! We're lucky enough to have a group of wonderful supporters who help us raise awareness and funds for people living with EB. Whether it's holding a fundraising event like a cake sale or taking part in a fundraising challenge, every pound raised helps us get one step closer to a world where no one has to suffer with the pain of EB. Here are just a few of our most recent fundraising heroes! David Poole – Manchester Marathon On the 14th April, David ran his first marathon, raising £400 for DEBRA. As if running a marathon wasn't challenging enough, David lives with EB simplex, which causes painful blistering on his feet... Me and my two sons both suffer from EB, so I'd like to raise money for the condition, especially for those who have the much more severe version. The condition affects the skin and makes it much more prone to blistering. Luckily, ours is the simplex version, which tends to only be noticeable on our feet, especially in hot weather. We've all had times in our lives when we couldn't walk with it, but luckily for us, these are short lived and manageable. For those with the complex version, it can be life threatening. I feel very blessed to be able to run with the condition and, bizarrely, running has actually improved it, but I'd like to help those others who aren't so blessed. Support David's fundraiser Sarah Morgan – Tissington Trail Marathon On the 21st April, Sarah ran her first ever marathon in a fantastic time of 4.23:39, raising £1,300 for DEBRA UK. Buxton resident Sarah Morgan, also a personal friend to founders of Tolley Health Economics Ltd, Keith Tolley and Amanda Strickson, ran her first ever marathon in a fantastic time of 4.23:39! Making it even more special was the £1,300 Sarah raised for DEBRA UK, the charity supporting patients and carers with the incredibly painful, genetic skin condition, (EB), also known as Butterfly Skin as people living with EB have skin as fragile as a butterfly's wing. Support Sarah's fundraiser Team Lossie take on the Loch Ness Etape On Sunday 28th April, a team of cyclists from Scotland, took on the Loch Ness Etape to raise funds for DEBRA. The Loch Ness Etape is a 66 mile cycle around Loch Ness, including 900m of ascent, reaching 12% gradient at times. The team are friends with Andy Grist and were inspired to take on the challenge by Andy's daughter Isla Grist, who lives with recessive dystrophic EB. The weather was perfect, with a chilly start and brightened up throughout the ride, there was no wind and we managed to stay dry all the way round. Over 5,600 cyclists took part making it an amazing experience. The course was very challenging especially the 4.8 mile climb. I think everyone had to dig deep at some point, but the thought of people suffering from EB kept us going, especially Isla! Support the team's fundraiser Inspired to #BeTheDifferenceForEB? Take a look at our fundraising ideas and resources, or get in touch with our fundraising team! Manage Cookie Preferences