We're lucky enough to have a group of wonderful supporters who help us raise awareness and funds for people living with EB.

Whether it's holding a fundraising event like a cake sale or taking part in a fundraising challenge, every pound raised helps us get one step closer to a world where no one has to suffer with the pain of EB.

Here are just a few of our most recent fundraising heroes!

If you'd like your fundraiser to be featured in our next fundraising round up, please get in touch with [email protected].

 

Scream Hair Studio fundraiser raises incredible £5,400!

On the 16th July, Scream Hair Studio in Garforth, Leeds held a charity event in aid of DEBRA. The team at Scream gave haircuts wearing butterfly wings and also organised raffles, a tombola, a Prosecco van, a cake sale and a live singer! Not only did the event raise an incredible £5,400 to stop the pain for people living with EB, it also raised awareness of EB in the local community.

Lesley Pepper, owner of Scream Hair Studio said:

We decided to fundraise for DEBRA UK as one of our clients, her granddaughter, Nell, lives with 'butterfly skin'. I have wanted to do something for quite a while now and was inspired to do so by Graeme Souness swimming the English Channel.

We were blown away by the support we were given by customers and just random people walking by seeing the advert in the window. People were just coming in and donating money or buying a raffle tickets.

We had a fantastic funny day and are so thankful by the money we raised as we are a very small independent salon.

 

Maidenhead Spurs Supporters Club host BBQ to raise funds for DEBRA!

The rain didn’t dampen the spirits of the Maidenhead Spurs Supporters Club who hosted a BBQ on 5th August where over £800 was donated by members through their sign-up fees, and other fundraising activities.

Prior to the 2023/24 season, MSSC decided to team up with DEBRA after learning that Joshua (aged 5), son of Juliet and Mark who are friends with the co-founders of MSSC, suffers from EB.

The club were moved after learning about how EB affects his day-to-day life and wanted to do all they could to raise awareness of EB and of the work that DEBRA does.

Tottenham Hotspur legend and former captain Steve Perryman attended the event and presented the cheque to Joshua.

 

Essex team take on Pier2Pier2Pier challenge!

On the 27th August, a team from Essex took part in a Pier2Pier2Pier challenge, walking from Clacton Pier to Walton Pier and back again (the equivalent of 14 miles!)

The team, friends and husband of Sophie Burton who lives with EB, were inspired to take on this challenge after seeing what Sophie goes through on a daily basis.

Our best friend Sophie Burton was born with EB. Throughout her wonderful and fulfilling life Sophie has endured SO much discomfort and pain. She was born with no skin on her right foot and has spent much of her life with dressings or bandages on her skin to safeguard it and protect it from further painful blistering. Things that most of us take for granted can cause horrible pain for her – eating, sleeping and walking.

For as long as we’ve known Sophie, we’ve seen her and her family having to lance her blisters and apply dressings to affected areas when wounds occurred, in more recent years this has now a become a part of her every morning and evening routine, she is unable to go a day without her torso protected. Getting up and leaving the house in the morning is much more of a task and every decision has to be measured with the potential later affects. She has so much courage and bravery. She has unwavering love and support from her family, her husband, friends and DEBRA - the 'butterfly skin' charity.

35,000 steps later, the team completed the challenge and raised a wonderful £3,200 in the process!

 

Tractor run fundraiser raises £1534!

We’d like to thank everyone involved in a fantastic tractor run which raised £1534 to help stop the pain for people living with EB.

The fundraiser was organised by Sarah Hamilton, whose son Harry lives with EB…

This is a horrendously painful skin condition that makes everyday a painful experience for harry and currently has no cure. Walking, talking, eating, wearing clothing, writing…things that we all take for granted on a daily basis. Harry is exceptionally brave and deals with the condition with determination and resilience, I am beyond proud of him everyday.

DEBRA provide me with not only financial support but emotional support providing a yearly meeting to meet other parents and children suffering with this cruel condition. The impact of their support makes everyday slightly easier and also supports vital funding towards research to find a cure, which we hope and pray will be within Harry’s lifetime.

 

DEBRA Scotland completely the three peaks challenge in under 24 hours!

We’d like to congratulate our Deputy Director of Fundraising, Laura Forsyth and team, who completed the 3 peaks challenge in under 24 hours!

Their reason for taking part was personal. Laura said:

We will be doing the walk in memory of my cousin Adana Forsyth who we sadly lost to this heartbreaking condition.

Everyone gave it their everything and we were so lucky with the weather meaning we got amazing views on all three mountains. Thank you to everyone who sponsored us it’s much appreciated!

They have raised over £22,000 for DEBRA which will make a huge difference towards our A Life Free of Pain appeal.

Support their fundraiser

 

Team from Race Hub swim the equivalent of nearly 6 English Channel crossings!

On the 2nd September 2023, a team of swimmers from Race Hub, open water swimming lake in Melton Mowbray, took part in a wild water marathon to raise funds to stop the pain for people living with EB.

Collectively the swimmers swam over 100 miles, which is the equivalent of nearly 6 channel crossings!

They were inspired to take on this challenge not only by Graeme Souness and the team’s Channel Swim in July, but by one year old Leo who was born with EB.

We have to make sure Leo does not get any trauma to his skin when we're out as this can cause open wounds which can get very difficult to heal. We can't take Leo into the sun or any kind of heat as his blistering and fragility increases this means days at home while It’s hot. Leo is on morphine when he is really bad as the pain is deliberating.

The team have raised over £1500 so far and the story was also featured on ITV news, raising much needed awareness for EB.

Support their fundraiser

 

Inspired to fundraise for DEBRA?

• Take a look at the run’s and challenges we offer. Or get in touch with [email protected] if you’d like to take part in a challenge not on the list.
• Take a look at our fundraising ideas and resources.
• Request a fundraising pack

Our friendly fundraising team are always here to help with any other enquiries. Contact the team by emailing [email protected].