DEBRA UK

Team DEBRA are back with a new challenge! 🏊♂️ 🚴♂️ If you missed BBC Breakfast this morning, that's right! This September, the team are back with another epic challenge to ‘BE the difference for EB.’ This time they're pushing themselves even further, swimming the English Channel there and back, and then cycling the 85 miles from Dover to London! "It’s going to be tough for sure. I’m not sure whether I can physically do the swim as I still haven’t recovered from my shoulder surgery earlier in the year, but I’ll give it my best shot. If I can’t swim, I’ll ride, I’ll do whatever I can, I have to. We need everyone to play their part to BE the difference for EB. Along the way I’ll be thinking of my friend Isla and the thousands of other children and adults who are living with the pain of EB right now. We can make a difference to their lives today and tomorrow." – DEBRA UK Vice-President, Graeme Souness Please donate today and BE the difference for EB: bit.ly/4fgIQc6

🌟 Join our first Research and Health webinar! 🌟 We’re excited to be launching Research and Health webinars, a brand-new series of online member events! For our first event, our Director of Research, Dr Sagair Hussain, will be joined by Kathryn Moore, who's been working as a Genetic Counsellor for the last six years. Come along if you’d like to know more about… 🧬 The chances of passing on EB to a child if you’re living with EB and thinking about starting a family. 🧬 Different genetic testing options for conditions like EB, so people can make informed decisions about the healthcare of their families. 🧬 Handling the diagnosis of a genetic condition, and more. 📅 Date: Wednesday, 4th September 🕐 Time: 1 PM Sign up today: bit.ly/4cCdxGg

Did you see our Vice-President Graeme Souness CBE and Isla Grist on BBC Breakfast this morning? Graeme and Isla met with the family of Barnaby Webber, a teenager tragically killed in the Nottingham stabbings. The family wanted to tell Isla in person that she would be the first person to receive a donation from the Barnaby Webber Foundation, set up to support young people in need. We'd like to thank the Webber family for acknowledging the strength of Isla, and all the children and adults who live with the pain of EB, and for helping to raise awareness of this cruel condition. It's not long to go now before Graeme and the team's 2024 Challenge, swimming the English Channel there and back, and then cycling 85 miles from Dover to London! Find out more and how you can support the team's challenge: bit.ly/4fgIQc6

⏰ Set your reminders! Tune in to BBC Breakfast tomorrow (21st August) at around 6:10am and 8:20am to see some familiar faces!

🦋 Albi's Butterfly Ball 🦋 We are thrilled to share that Albi's Butterfly Ball, held on the 16th August at Coed y Mwstwr Hotel Bridgend, raised an incredible £42,000 for DEBRA UK! This unforgettable evening was made possible by the tireless efforts of Erin Ward, mum to baby Albi, and her amazing family. Albi was born with recessive dystrophic epidermolysis bullosa (RDEB) and celebrated his one year birthday yesterday (19th August). The ball was attended by DEBRA UK President, Simon Weston CBE and Janet Hanson, an EB Clinical Nurse Specialist at Great Ormond Street Hospital, who both gave speeches on the night. A huge thank you to Erin and her family, for organising this wonderful event and for all they are doing to BE the difference for EB, including their upcoming Kenya trek and Cardiff Half Marathon. We'd also like to thank the event sponsors for supporting the night, Smart BodyShop Solutions group, Mirror Image Accident Repair Centre and MW Vehicle Services Ltd, and everyone else who attended and helped to raise funds for families living with EB. Support the families fundraiser: bit.ly/4e92827

Shining in South Queensferry 🌟 It was a busy day on Friday as we opened our 2nd new shop of the day in South Queensferry! Officially opened by Scottish rugby legend Chris Patterson MBE, the store is treasure trove of high quality and affordable pre-loved items and features a fun children’s area, and womenswear boutique. Fancy popping by? You can find us here: 📍 35a High Street, South Queensferry, EH30 9HN 🕑 9:30am - 5:30pm Monday - Saturday, 11am - 5pm Sundays We look forward to welcoming the local community through the doors to help raise funds plus all-important awareness of EB. Find out more about South Queensferry and our other stores at https://bit.ly/3yH7nXw

Meet Abi, Research Grants Manager at DEBRA UK 👋 "I worked in labs on genetic conditions for more than a decade without meeting the people I was trying to help. At DEBRA UK, we’re bringing researchers and people living with EB together, making our work feel more purposeful and impactful than ever before. DEBRA UK is full of wonderful, supportive people who all bring their own expertise together to work towards the common goal of making it easier to live with EB." "One of our team’s topline plans for 2024 is to fund researchers working on all symptoms of EB, as highlighted in the 2023 Impact Study. We partnered with the Cancer Research UK Scotland Institute earlier this year, to tackle early onset cancer in patients with recessive dystrophic epidermolysis bullosa (RDEB). People living with RDEB face a higher risk of developing early-onset aggressive skin cancers at a young age. With this new partnership, we hope to gain a better understanding of how the cancerous cells develop, and therefore identify potential drug treatments that could possibly help slow or stop the progression of skin cancer." Discover more about the research projects DEBRA UK funds: bit.ly/4dBRL6p

Looking good Guildford! 🤩 This morning, we were delighted to open our latest new shop! Deputy Mayor of Guildford, Howard Smith, did the honours cutting the ribbon, and we were also joined by local DEBRA members including DEBRA UK Trustee Mick Thomas, and Sarah Thomas. This little shop on the corner is brimming with quality pre-loved fashion and homeware, plus a dedicated children’s area selling kid’s clothing, toys and games. Fancy popping by? You can find us here: 📍 94 Stoke Road, Guildford, Surrey, GU1 4JN 🕑 9am - 5pm Monday - Saturday, 10am - 4pm Sundays Find your local DEBRA store: bit.ly/3yH7nXw

🌍 Ready for the adventure of a lifetime? Join #TeamDEBRA in October 2025 and climb Mount Kilimanjaro to raise vital funds for families living with EB. This Kilimanjaro trek begins in the lush rainforests of the Lemosho Glades, climbing towards the Shira Plateau. From here it follows the Southern Flank, Barranco Wall and Barafu Route to the summit. Every step you take will help us provide essential support and fund life-changing research to improve the quality of life for those living with EB. Don't miss your chance to be part of something incredible! Sign up today and #BeTheDifferenceForEB: bit.ly/4dp14XR

We are delighted to be able to announce another new DEBRA UK ambassador, with Simon Davies the latest to join #TeamDEBRA! 🤝 As well as attending, bringing along guests, and thus introducing new people to the charity at our gala events, for the past 10 years Simon has also kindly auctioned off 2 weeks every year in his ski chalet which to date has raised an incredible £150,000 to support the UK EB community. We are hugely grateful for everything that Simon has done to support the charity and the thousands of children and adults in the UK that live with the pain of EB. Read more! 👇