DEBRA UK

Putting the ✨fun✨ in fundraising! Have you seen our 2025 events calendar? From golf days to gala dinners, festivals to fun runs, there's something for everyone! Plus, every event funds vital care and research to help stop the pain of those with EB. Coming up... 🏉 27 February - Last tickets remain for our exclusive Lunch with Mike Tindall MBE! 🏇 11 April - Join Debra Scotland Events and Fundraising at the Scottish Grand National. 🏆 21 May - Take part in our Clay Pigeon Sporting Challenge at the prestigious E.J. Churchill Shooting Ground. Find an event near you: bit.ly/40OAIct

Next in our 'meet #TeamDEBRA series', say hello to Heather, one of our EB heroes running the iconic London Marathon on Sunday 27th April 🏃♀️ "My brother, Tom, and I both live with epidermolysis bullosa simplex or EBS. Tom took part in the Brighton Marathon in 2024 for DEBRA despite being in complete agony from mile four. He ended up spending several hours in the medical tent. Seeing what he could achieve despite his EB was all the encouragement I needed to get to the start line! I’ve wanted to run the London Marathon all my life and have watched it every single year for as long as I can remember. It’s such an iconic event to be a part of! I’m not a runner, and as my EB symptoms have worsened with age, I didn’t think it was something that I’d be able to achieve. Being able to raise money for DEBRA as someone with EB means the world; it truly is a cause close to my heart. I also wanted to show what us ‘EB-ers’ can achieve - we are a mighty strong bunch!"

Yesterday, we were in Cardiff talking to members of the Welsh Senedd about EB, DEBRA and the work we do to support the EB community in Wales and across the UK. Joining DEBRA's Director of Research Sagair Hussain, PhD, and our EB Community Support Team Leader, David Williams, was our President, Simon Weston CBE, and DEBRA member and ambassador, Erin Ward, and her son Albi, who has dystrophic epidermolysis bullosa generalised severe, and DEBRA member, Melinda Venczel, who has kindler epidermolysis bullosa. As always, we are very grateful for the support that our members give us, and it was great to have Erin, Albi, and Melinda join us. Also, a big thank you to our sponsor, Joel James, MS for South Wales Central, to Simon Weston CBE, for his continued support of the charity, and to the members of the Senedd who took time out of their busy schedules to come and find out more about EB and offer their support. 👉 Read more on our key asks and how you can get involved in our political campaigning: https://bit.ly/4iDZcwO

We rely on the generosity of our supporters to continue the fight against EB, or butterfly skin. Every gift can help stop the pain, and gifts in Wills are vital in helping us achieve this. Last year, gifts in Wills equated to 25% of DEBRA’s income – enough to fund a full clinical trial. Clinical trials are essential as repurposing existing drugs could significantly improve EB symptoms, transforming overall quality of life. Your legacy could mean cuddles bring comfort, not pain 🫂 Leave a lasting embrace with a gift in your Will and consider leaving a gift to DEBRA. ➡️ Learn more about our free Will writing services: https://bit.ly/4hnlcus

📢 Final call to all researchers! The deadline for applications for our 2025 funding is 31 March 2025. 🔬 Project grants – up to £200,000. Closes 31 March 2025. 🔬 Small grants – up to £15,000. Closes 31 March 2025. 🔬 Non-clinical PhD studentship – up to £140,000. Closes 31 March 2025. Join us in advancing knowledge, driving innovation, and working towards a brighter future for individuals living with EB. Submit your application now! 👉 bit.ly/4k2pLNm

Over the coming weeks, we'll be introducing you to some of our amazing #TeamDEBRA runners for both London Landmarks Half Marathon and London Marathon 2025! First off, meet Bryan, one of our heroes running the London Landmarks Half on Sunday 6th April 🏃 “I took up running at the beginning of 2014 with a view to getting fit. I hadn’t done much exercise since I left school in 1984 so, at the age of 46, I started running at my local 5K Park Run. With their support, it inspired me to go further and take on greater challenges such as local five miles & 10K runs culminating in my local half marathon. Having made this first step, I then wondered what I could do in terms of raising funds for DEBRA UK. I wanted to give back to the charity that had given so much support to our family. Our daughter Mia was born with severe junctional epidermolysis bullosa (JEB). DEBRA supported us throughout her life, from the initial diagnosis, through to the important home visits by specialist nurses funded by DEBRA, who gave my wife Maxine and I the confidence in caring for our beautiful firstborn daughter at home. Mia sadly lost her battle with EB and died at the age of 20 months in 2005. I reached out to DEBRA’s fundraising team, and they suggested I could do the Great South Run in Portsmouth. During my training I thought I could go even further so I contacted them again. I was offered a place in the London Marathon team of 2015 and am forever grateful for the opportunity. I count this experience as one of the best in my life. I continue to run, adorning my DEBRA running vest at various events and will be taking on the London Landmarks Half Marathon again in 2025. Our family drew upon the research, care, and support of DEBRA. I will continue, like so many others affected by this condition, to raise funds and awareness of EB for the rest of my life. I hope I can inspire someone reading this to sign up for a challenge and raise funds for such a great cause now or in the future."

Looking for a unique way to strengthen your team, connected with like-minded professionals and support the EB community? 🎯 Look no further than the DEBRA Clay Pigeon Sporting Challenge at the prestigious E.J. Churchill Shooting Ground, in partnership with Land Rover Oxford and Reed Smith LLP. 📅 When: Wednesday 21st May 📍 Where: E.J. Churchill Shooting Ground, West Wycombe Estate, Buckinghamshire 🏆 Five team flurries 🥂 Relaxed breakfast with tea & coffee, a champagne reception, and a two course lunch with wine. 🎫 £1,750 per team of four people This event isn't just about sharp shooting - it's about promoting teamwork, building relationships, and enjoying a day out with colleagues and clients, all whilst supporting a good cause. Get in touch with Kate Guy for more information, or book your tickets here 👉 https://lnkd.in/eXRX-TBQ

How does living with EB impact your mental wellbeing? The British Skin Foundation and the Skin Health Alliance have partnered with DEBRA UK and other leading skin organisations to better understand how living with a skin condition can affect mental health. ⏲️ Got 5 minutes to spare? Take a quick survey and help the EB community highlight the significant impact living with EB can have on a person’s mental wellbeing. https://lnkd.in/eh-rDcsh Your voice matters - thank you for sharing your experience.

🔬 Research highlight: Increasing YAP/TAZ to accelerate wound healing 🔬 Led by Dr Gernot Walko at Queen Mary University of London, this PhD project is a proof-of-concept study to determine new therapeutic opportunities for improved wound healing. Read more about the project! 👇

To mark the start of Free Wills Month, we’re highlighting what gifts in Wills from our wonderful supporters have helped us achieve in terms of EB research since the year 2000 🔬   Over 24 years, we have funded 167 research projects, worked with 127 researchers across 55 institutions and in 16 countries.   A gift in your Will to DEBRA, no matter the size, will continue to fund research into treatments to help stop the pain of butterfly skin 🦋   👉 To find out more, visit: https://bit.ly/41fvXZG   #FreeWillsMonth