DEBRA Bathgate

26/06/2026

This week’s heatwave has been unbearable for many - but for people living with epidermolysis bullosa (EB), it’s even more dangerous.

As temperatures rise, so does the pain.

Skin becomes more fragile. Blisters worsen. Sleep becomes harder.

For families like Jasmine’s, something as simple as a fan can make a life-changing difference.

💜 With your support, we can provide vital cooling items like fans, air conditioning units and specialist clothing - helping people with EB stay safe and more comfortable through the months ahead.

Please donate today and help someone with EB stay cool this summer: https://bit.ly/3T2pbGc

26/06/2026

Have you ever thought about the difference you could make beyond your lifetime?

By leaving a gift in your Will to DEBRA UK, you can help fund life-changing research and support for people living with epidermolysis bullosa (EB) - an extremely painful and rare genetic skin condition.

Our free Gifts in Wills guide explains everything you need to know, in simple, reassuring terms - from how it works to the impact your kindness could have.

💙 Download your free guide today and explore how you could help stop the pain of EB for future generations: https://bit.ly/46BiQWS

25/06/2026

What a day to remember! 🚣‍♂️

Our first-ever DEBRA UK Dragon Boat Race brought together amazing teams, supporters, and spectators in London’s Docklands - and together, raised an incredible £14,600! 💙

From the racing action to live music, a lively raffle, and plenty of smiles, it was a brilliant day full of community spirit - all in support of people living with EB.

Every pound raised helps us continue to , providing vital care and funding research towards treatments and a cure.

👉 Find out more about the day on our website: https://bit.ly/4aPEsjQ

24/06/2026

☀️ Staying cool with EB during this week’s extreme heat

Hot weather doesn’t just feel uncomfortable - it can increase skin fragility, lead to more blistering, and raise the risk of dehydration.

To all our members who may be struggling right now, we’re thinking of you - please take extra care and know you’re not alone. 💙

Some of the most helpful advice comes from within our own community. Here are a few tips shared by DEBRA members:

💧 Keeping a jug of water nearby (and ice lollies in the freezer!)
🧴 Storing moisturiser in the fridge for a cooling effect
🧦 Switching to breathable fabrics like bamboo or silver-fibred socks
🧊 Using cooling cushions or gently wrapped ice packs
🚿 Taking cool showers or rinsing pulse points with cool water

We know everyone’s experience with EB is different, and what works for one person may not work for another - but we hope that some of these tips and tricks might help you to stay a bit cooler in the heat.

Read more on our website: https://bit.ly/4b9qQQz

Do you have any extra tips for coping with EB in hot weather? Tell us in the comments 👇

23/06/2026

Do you have 10 minutes now and then to spare? 🕰️

Join the DEBRA Involvement Network and discover simple ways you can use those 10 minutes to make a real difference for the EB community.

From shaping research to sharing your views, there are lots of ways to get involved.

For example, we keep an eye on surveys and opportunities from other organisations that may affect you…

Take a look at these short surveys from Disability Rights UK:

🔹 Transport for disabled children and young people survey: https://bit.ly/4oiQJTl (closes 30th June)

🔹 Personal Independence Payment (PIP) survey: https://bit.ly/3SbUdes (closes 25th July)

Your voice matters and just a few minutes could help influence real change.

🦋 Sign up to the DEBRA UK Involvement Network today to hear about ways you can get involved: https://bit.ly/3Ix9thq

22/06/2026

⏰ Last chance to book! ⛵

Our Tall Ships Youth Trust 4‑night voyage is fast approaching - and it’s shaping up to be an unforgettable experience 💙

This incredible trip gives young people living with EB the chance to build confidence, learn new skills, and connect with others who truly understand - all while out at sea 🌊

There are just a few places left, so now’s the time to secure your spot.

✨ Expect a unique, life‑changing sailing experience where you’ll build friendships, grow in confidence and learn new skills in a safe, supportive environment. The voyage takes place from Monday 26th - Friday 30th October 2026, departing from Portsmouth Docklands, with a cost of £75 per young person.

We don’t want cost to be a barrier - so please do get in touch if you’d like to discuss support options.

👉 Book your place now: https://bit.ly/4gxA6l0

Let’s make this unforgettable experience happen for our members 🌊

21/06/2026

Exciting new DEBRA UK funded EB research project💡

Dr Svitlana Kurinna will train a new EB research expert at the The University of Manchester (UK).

This project will explore whether a small molecule called microRNA-29 (miR-29) plays a role in strengthening how skin cells (keratinocytes) attach to each other, using a technique called atomic force microscopy.

Discover more about this important work on our website 👉 https://bit.ly/49RvDW7

Dr Svitlana Kurinna will train an EB research expert through this PhD project on junctional EB using microRNA-29 and atomic force microscopy.

21/06/2026

This Father’s Day, we’re celebrating the love and support shown by dads and father figures in the EB community 💙

We also recognise that today isn’t easy for everyone. Whether you’re living with EB, supporting someone, or remembering a loved one, you’re not alone - DEBRA and the EB community is here. 🦋

20/06/2026

🎉 Big news… the TCS London Marathon is expanding to two days in 2027!

We’ve already secured places for the Sunday race, and now there’s an opportunity for us to apply for spots in the brand new Saturday event too 🏃‍♂️💙

👉 Would you consider running on the Saturday?

It’s the same incredible London Marathon experience - just on a different day - and there’s no commitment at this stage. We’d simply love to understand who might be interested as we plan ahead.

💬 Let us know here: https://bit.ly/44khlKv

As always, thank you for your amazing support 💙

19/06/2026

🌟 Feel-good Friday fundraisers! 🌟

Thanks so much to our recent fundraisers who have gone above and beyond to support the EB community:

🥾Community walk fundraiser: around 30 wonderful walkers joined a scenic route from Ashford through Wye to Crundale Church and back, finishing with a lovely picnic lunch 🧺 The walk was organised by Alison, whose granddaughter Darcy lives with EB, making this a truly special and personal effort. Thanks to everyone’s generosity - including extra collections organised beforehand - the support within the community has been absolutely incredible.

💪 Landmark Hotel London Team: 17 amazing team members took on Tough Mudder 2026 - conquering climbing walls, crawling through mud, and pushing through some seriously tough obstacles. What an achievement!

🏃 Stephen’s Newport Marathon: Stephen smashed his fundraising target at the Newport Marathon in April, running in memory of Iqbal “Bal” Domun. Bal lived with EB and faced constant pain, yet will always be remembered for his positivity, humour, and uplifting spirit 💙

✨ We are so grateful to each and every one of you - you are helping us move closer to a world where no one suffers with EB.

Feeling inspired? You can join and take on your own fundraising challenge - as an individual or with friends, family, or colleagues.

Request your free fundraising pack here 👉 https://bit.ly/450xnt2