DEBRA UK

#TeamDEBRA are now on day 64 of their 80 Days Global journey and nearly 20% of their way around the globe - currently they’re making their way through Pakistan! Current milestones: 🏃 6,933 miles travelled 🗺️ 18 countries visited 👣 Nearly 15 million steps taken Over the last few weeks, Kirsten completed her 21km swim in a mixture of pool and open water, Gary enjoyed a walk in Dawlish along the Southwest Coast in the sunshine, and Maxine organised a craft raffle with her friend Yvonne. She also got a few steps in helping others with their crafting 🪡 It’s not long until the challenge ends – please support #TeamDEBRA in the final few weeks of their virtual adventure: bit.ly/3yubciq

🔬 Research blog: Taming Viruses to Fight EB 🔬 Meet our researcher, Dr Ángeles Mencía. She is working on an improved viral delivery of gene therapy to RDEB skin which could lead to longer lasting, more effective symptom control with fewer side effects. "Our research efforts are directed towards a topical "viral cream" with the potential to help heal all the skin blisters and wounds suffered by people with EB, leading to permanent healing of the treated areas." Read Dr Mencía's blog! 👇

"I want people to know that you can do anything you put your mind to, even with EB. Obviously my skin tears easily and rugby is really aggressive but I don’t let that stop me. I've never let my skin stop me from doing what I want to do." Read our latest EB stories blog post, written by DEBRA member, Izzi Halls, who lives with EB simplex (EBS) 👇

We're thrilled to officially announce our charity partnership with Eutopia Search, a high-end recruitment consultancy firm. Eutopia have already shown their support for the EB community by attending our Jason Robinson Dinner, JCB golf day and purchasing two tables for our 2025 Great Chef's Dinner, which will take place in September. We can't thank Eutopia enough for their support and look forward to working together to #BeTheDifferenceForEB.

🚗🎉 Win a Classic Car! 🎉🚗 If you're a Car SOS fan, like our DEBRA President Simon Weston CBE, you could be in with a chance to win Tim Shaw's very own 1998 BMW E36 M3 Evolution Convertible! Enter the draw for only £5 per ticket. All proceeds will go towards supporting the EB community. Enter now: bit.ly/4dQlkC3

📢 Filsuvez® update for Scotland! Today we received confirmation that Filsuvez® has been accepted for use by NHS Scotland for EB patients aged 6 months and older. Read more! 👇

🔬 Research highlight: repurposing statins for RDEB cancer 🔬 Led by Dr Zauner, at the EB House, Austria, this project aims to provide evidence that cholesterol-lowering tablets could slow the progression of skin cancer in RDEB. Read more! 👇

✍️ Write to your MP and help raise awareness of EB. Now that the #GeneralElection has been decided, it is a good opportunity to get the attention of your local MP/MS/MSP and ensure they are aware of EB and the challenges that people living with all types of EB face daily. Find out more and download our draft letter 👇

🔬 Research blog: How do germs stop EB wounds from healing? 🔬 Meet our researcher, Dr Hadeer Ibrahim from the University of Birmingham. She is working on identifying and targeting the germs living in ‘biofilms’ on EB wounds. "An increased understanding of why EB wounds fail to heal will help us to develop new therapies targeted at the biofilms and the microbes living in them. This will lead to a more personalised approach to therapy, resulting in better wound management and faster healing of chronic wounds in EB patients." Read Dr Ibrahim's blog! 👇

We couldn't fight EB without our fantastic fundraisers! 🤩 Here are just a few of our most recent fundraising heroes. ✨ A team of five (Paul Glover, Martyn Rowley, Scott Bacciochi, Steve Shore, and Lee Roan) embarked upon a 55 mile walk from Clitheroe to Lake Windermere, followed by taking part in the Great North Swim. ✨ On the 9th June, a team of 6 (Leanne, Gareth, Dewi, Ella, Charlie, Scott) took part in the Swansea Half Marathon, inspired by 10-month baby Albi, who was born with recessive dystrophic EB (RDEB). ✨ On the 16th June, a team of 10 from Trek Bracknell, took on the London to Brighton cycle. The team completed the 85km race in 4 hours and 19 minutes and have raised over £3,000 so far. ✨On the 2nd June, a team of four graduates (Rebecca, Dylan, Imad and Myles) from Ardonagh Group, took part in Richmond Park Half Marathon. Rebecca lives with EB simplex. ✨ Chris Pressdee took on the epic challenge of cycling 50km a day for 50 days, to celebrate his 50th year and raise funds for DEBRA. ✨ Poppy hit a PB, raising funds for DEBRA, at Leeds 10k! Inspired to #BeTheDifferenceForEB? Get in touch with our fundraising team by emailing fundraising@debra.org.uk.