DEBRA Ayr

🌍 Ready for the adventure of a lifetime? Join 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 : bit.ly/4dp14XR

📣 An exciting development for genetic conditions as the first therapy that uses gene-editing is to be offered on the NHS.

The therapy which uses cutting edge CRISPR technology, will be used as a potential cure for the genetic blood disorder beta thalassaemia.

At DEBRA UK, we are funding multiple gene-editing research projects, including the use of CRISPR technology, aiming to repair the broken collagen gene associated with EB and offer a more permanent genetic 'fix' for EB.

Read more about the research projects we are funding: bit.ly/4dBRL6p

Beta thalassaemia: First gene-editing therapy could cure disorder The treatment for beta thalassaemia is to be offered on the NHS and uses Nobel Prize-winning technology.

☎️ New phone line for the EB community!

Did you know? Our EB Community Support Team have recently started trialling an Information and Enquiries Line, every Monday between 9am and 1pm, for people living with EB and EB healthcare professionals.

📞 Get in touch with the team by calling 01344 577689

Don’t worry if you can’t call during this time. If you need to contact us outside of these hours, you can still get in touch by email at [email protected]. You can still call 01344 577689 throughout the week as well, but may need to leave a message.

A few of our most recent fundraising heroes who deserve their own Olympic podium moment! 🤩

🏅 A team from Peninsula UK completed the Peak District Ultra Challenge.
🏅 Rachel, Janet and Carla, or 'The Butterfly Babes' took part in a car rally across Europe, raising over £3,000.
🏅 The team at Tolley Health Economics Ltd. took on a variety of fundraising activities during July, raising £3,500.
🏅 Telecommunications company, We Are Gamma. hosted 'The Gamma Games' raising an incredible £60,000 for their 3 chosen charities, including DEBRA.
🏅 The Faiers family coffee morning for Darcy, who lives with recessive dystrophic EB (RDEB).
🏅 Our Great Bookham Shop Assistant, Sian Bartlett and her friends, took part in a Snowdonia challenge weekend, including hiking Snowdon and going on the fastest zipline in the world, Velocity 2.
🏅 Rebecca Wade and Steven Bates participated in a 10km inflatable challenge.
🏅 Kelvin Barker and Carrie-Ann Tucker hosted their annual fishing fundraiser, inspired by their daughter Charli-Mai, who lives with EB.
🏅 Wendy Garner Hutchinson from Empro, took part in a skydive raising £1,000.

A huge thank you to all our fantastic fundraisers for helping us to support families living with EB.

Read more 👉 bit.ly/3ymtse1

The violence and racism we've seen across the UK over the last week has been deeply distressing.

To members of our EB community who may be feeling scared and vulnerable, know that we stand with you and are here to support you.

If your mental health has been affected, you can access the following resources for support…

💙 Our experienced Community Support Team are here to provide emotional and practical support for members and their families living with all types of EB across the UK. They can also signpost towards further psychological support. Get in touch with [email protected].
💙 You can call our new Information and Enquiries phone service on 01344 577689, every Monday from 9am-1pm.
💙 24/7 support on Togetherall - we have partnered with an award-winning mental health service called Togetherall (free for all DEBRA members) where you can anonymously share experiences and find resources to support mental health and wellbeing. It offers 24/7 anonymous peer and community support, with trained clinicians online at all times.

Find out more 👇

Mental health & emotional distress If you are struggling and need support, our Community Support team is available for first line emotional support, or to signpost to further psychological support, from Monday - Friday (9am - 5pm).

We want YOU to be part of the action! 🏊🚲🏃

You may have heard that our Vice President, Graeme Souness CBE, and Team DEBRA are taking on another epic swim/cycle challenge this September.

Although it isn’t possible for you to join them on the day, you can still support the team and BE the difference for families living with EB.

🏊 Organise your own swimathon
🚴 Take on a cycling challenge

Create your fundraiser on Give as you Live today: bit.ly/3OxiBT0

🔬 Research highlight: DEB cancer and wound healing in the mouth 🔬

Led by Dr Inês Sequeira at Queen Mary University of London, this project aims to understand scarless healing and cancer resistance in DEB.

Read more about the project! 👇

DEB cancer and mouth wound healing Dr Inês Sequeira, Queen Mary University, London, UK

On 31st July, completed their 80 Days Global virtual challenge! 🌍

The team of 50 managed to travel 25% around the globe, visit 21 countries, travel 9,000 miles, and complete just under 19 million steps!

Although they didn’t make it around the globe, they raised vital funds along the way for those with EB.

Thank you to all 80 Days Global team members for BEing the difference for EB!

A night to remember 💙

Last week, friends of DEBRA UK including Trustee Mick Thomas and his wife Sarah held a dinner to celebrate what would have been their son Oliver’s 35th birthday.

The event was attended by almost 100 of Oliver’s friends and family and raised £7,000, which will help DEBRA to provide enhanced EB community care and support for people living with all types of EB.

We'd like to thank Mick and Sarah Thomas for coming up with the idea, Sarah Valentine for organising, Effingham Golf Course for hosting, and everyone else who made the night so special.

Read more 👉 bit.ly/4c7p2VZ

🔬 Research blog: Being a researcher is not a job, it's a lifestyle 🔬

Meet our researcher, Dr Joanna Jacków-Malinowska from King's College London. She is working on using gene therapy tools, including CRISPR-Cas9, to develop a permanent treatment that would bring life-long relief from DEB skin symptoms.

"The CRIPSR-Cas9 system allows us to cut and paste pieces of genes. When the potential of using the CRISPR-Cas9 system for correcting broken genes became apparent to me, I knew that I wanted to follow this path and eventually be able to develop a cure for inherited diseases including EB."

Read Dr Jacków's blog! 👇

Being a researcher is not a job, it is a lifestyle I would like to change the lives of people living with EB.

THANK YOU 💙

It's been a busy week for Graeme and Isla after their BBC Breakfast interview on Tuesday but one thing has kept them going - the incredible support they’ve received!

So far you've helped us raise over £60,000 to help families living with this cruel condition.

Whether you've donated, visited one of our stores, signed up to fundraise, sent a message of support, shared our social media posts, or more, every action takes us one step closer to a world where no one suffers with the pain of EB.

Please continue to spread the word about Graeme and Isla's story and help us reach our target: bit.ly/4fgIQc6

We have some new faces around here 👋 so we thought we'd share some facts about EB.

🦋 Epidermolysis bullosa (EB) is the name for a group of painful genetic skin blistering conditions which causes the skin to blister and tear at the slightest touch. With skin as fragile as a butterfly’s wings, it is often called ‘Butterfly Skin’.
🦋 It is estimated that there are at least 5,000 people in the UK living with EB, and 500,000 people worldwide.
🦋 There are 4 main types of EB: EB simplex, dystrophic EB, junctional EB and kindler EB.
🦋 Depending on the type, EB can affect the hands and feet only, or in the most severe cases, any part of the body, including blistering on the eyes and internal organs.
🦋 EB is NOT contagious, it is inherited through a gene mutation, which means the skin cannot bind together.
🦋 There is currently no cure for EB. DEBRA UK is investing in research to find life changing treatments to stop the pain of EB.
🦋 Our vision is a world where no one has to suffer with the pain of EB 💙

Please visit our website to find out more about EB: bit.ly/3q0QlPm

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

Welcome to the team Scott Brown! 👏

"To see what these families go through day to day, how mums and dads can hardly even give their children a cuddle, is heartbreaking, and so if I can help someone else’s child by putting a smile on their face or doing something to bring money into the charity or raise awareness, every little bit helps.

I am delighted to be an ambassador for DEBRA UK, and I will do whatever I can to BE the difference for EB."

Read more! 👇

Scott Brown becomes an ambassador for DEBRA UK We are delighted to be able to count on the support of Scott Brown, the former Scotland international and Celtic FC midfielder as an official DEBRA UK Ambassador.

🔬 Research highlight: wellbeing toolkit for all EB parents 🔬

Led by Prof Andrew Thompson, this project aims to develop a self-help toolkit to support wellbeing in parents of children with EB.

"The project will fill an important gap in psychological support resources and aims to provide parents of children with EB a set of therapeutic techniques to manage the stresses associated with providing care for a child with a chronic and life-long skin condition."

Read more about the project! 👇

Wellbeing toolkit for all EB parents Prof Andrew Thompson, University of Cardiff, UK

🌈 celebrates Pride! 🌈

A shoutout to our Southbourne shop team who took part in the Bourne Free Pride parade to show their support for LGBTQ+ community.

At DEBRA UK, we believe that every individual deserves to feel safe, seen, and celebrated for who they are. Join us in embracing diversity, spreading love, and creating a world where everyone can proudly be their authentic selves 💙

🌟 Exciting research opportunity for parents and siblings impacted by epidermolysis bullosa (EB)! 🌟

Sarah Downey, a researcher from Cardiff University is exploring the family experience of EB, with a specific focus on the experience of siblings living with a brother/sister with EB. The aim is to fill in the gaps about how EB impacts families, and specifically the siblings, of those living with EB. Sarah is hoping to interview a few pairs of a parent and their child in online, private sessions.

She would love to hear from families with children between 7-16 years old which include a child(ren) who is living with any type of EB, and a child(ren) who is not living with EB. If you, as a parent, are also living with EB you are eligible to take part in this study.

👉 Want to be a part of this important research, or interested in finding out more? Contact Sarah at [email protected].

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 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! 👇

Unlocking Hope: Taming Viruses to Fight EB Our efforts are directed towards creating a “viral cream” with the potential to heal EB skin wounds

"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) 👇

Playing rugby is the last thing people expect for someone living 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.

📢 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! 👇

Filsuvez® accepted for use by NHS Scotland for EB patients We were delighted to receive confirmation today (Monday 8th July) that Filsuvez® has been accepted for use by NHS Scotland for EB patients aged 6 months and older.

🔬 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! 👇

Repurposing statins for RDEB skin cancer Dr Roland Zauner, EB House, Austria

✍️ Write to your MP and help raise awareness of EB.

Now that the 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 👇

You can BE the difference in our government campaigning Now is a good opportunity to get your MP/MS/MSP's attention and ensure they are aware of EB and the challenges that people living with all types of EB face daily.

Let’s talk holidays! 🏖️ ✈️

We want to know how you prepare for holidays living with EB, to improve the information we give our members.

If you’re living with, or caring for someone with, EB, come along to our online meeting and share your holiday experiences and top tips with us.

Find out more: bit.ly/4eQXUwV

Re-opening update 🚨📣

Due to unforeseen circumstances, the new Ayr store will not be re-opening as planned this Friday.

Please keep an eye out for further information on our new re-opening date.

Thank you!

UPDATE: POSTPONED UNTIL FURTHER NOTICE

One week to go! 📅

The countdown is on, with just one week to go until we re-open in our new location.

Don’t worry we haven’t gone too far, you can find us at:

120-122 High Street
Ayr, Ayrshire
KA7 1PR

Be sure to mark it in your calendars, 26th January at 12pm - we’re looking forwarding to seeing you all there!

DEBRA AYR WILL BE RELOCATING SHORTLY
TO NEW PREMISES.
WE ARE STILL TAKING DONATIONS
THANK YOU

Our amazing volunteers Grahame and James are taking part in The Mighty Stride Kiltwalk on Spetember 17th walking 21 miles to raise funds for DEBRA!

Please support this amazing effort by donating to their Just Giving page linked below:

Grahame 's fundraiser for DEBRA Help Grahame Parker raise money to support DEBRA

volunteers james ,Grahame Rachael ..
are playing there part this week to help raise funds please come and support them . starting this week on a bike in shop and the two lads are walking 21 miles on Sunday if you would like to sponsor them
please pop in shop give them support today and if you see them out and about on Sunday give them a shout pictures to follow
thank you

Even in its mildest forms EB causes daily discomfort for sufferers. Simply walking can cause blistering and eye watering pain 😞

You can help by donating your unwanted items, shopping with us or even volunteering! 🥳

Message us to find out more 📱

“Life Is A Game, Golf Is Serious”

Did you know we have an Ebay store for some of our more specialist items? 🏆

Visit https://www.ebay.co.uk/str/debracharity to browse our online store now 📱

We have some absolutely beautiful items in stock for you this week! 🤩

Hoppy Easter from DEBRA Ayr 🐣