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!

 

Butterfly babes car rally

On the 4th July, the 'Butterfly Babes' (Rachel, Janet and Carla) set off on a car rally across Europe, travelling through 6 countries in 3 days. Not only did the team raise an incredible £3,257 for DEBRA, they also raised much needed awareness of EB by decorating their car with butterflies!

The team were inspired to take on the challenge by Rachel's son Simon, who lives with EB…

In 2003, Rachel's world turned upside down with the arrival of a 3rd son, Simon. It had been a straight-forward home birth and all appeared normal. Sadly, 3 days later, Simon started breaking out in blisters all over his tiny body. After 3 days in hospital and none of the medical team being able to diagnose  the problem, Great Ormond St were called in. They came down to Surrey and performed a biopsy. 3 weeks later, the Tredwell family were given the awful news that Simon had epidermolysis bullosa (EB for short). It is an incredibly rare condition that very few people have heard of.  His care used to take 4 hours a day to burst his blisters. He suffered a great deal of pain, but was incredibly lucky to have one of the less serious types of EB.

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Peninsula UK

On the 6th July, a team from Peninsula UK took part in the Peak District Ultra Challenge!

Peninsula have committed to raising a minimum £1 million over the next 3 years to help DEBRA BE the difference for EB.

We are so grateful to everyone who took part and for all that Peninsula are doing to help raise funds and awareness for families living with EB.

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Tolley Health Economics

Throughout the month of July, the team at Tolley Health Economics took on a variety of fundraising activities to help raise funds for families living with EB…

• Members of the Tolley team ran, rowed, ski-ed, spun, and climbed stairs over a non-stop, 24-hour period at their local gym.
• Senior Medical Writer Joanne Noble-Longster raised £220 selling beautiful, bespoke jewellery and handmade butterfly cards.
• On the 6th July, co-founders of Tolley Health Economics, Keith Tolley and Amanda Strickson, along with Clinical Operations Lead, Christine Worsley, took part in the Peak District Ultra Challenge. Mandy and Christine did the 25km route, taking just under 5 hours, and Keith took on the biggest challenge by walking the full 100km, taking 23 hours and 22 minutes.

Together the team have raised over £3,500 to support families living with EB.

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The Gamma Games

During July, telecommunications company, Gamma, hosted 'The Gamma Games', a gathering of their supplier community for a day of dodgeball, football tournaments and a traditional school sports day.

The day raised an incredible £60,000 for their 3 chosen charities, Hideout Youth Zone, Family Fund & DEBRA.

A huge thank you to Gamma and everyone involved in making this fantastic fundraiser happen.

 

Coffee morning for Darcy

On Saturday 3rd July, the Faiers family held a coffee morning, raising £1,020 for DEBRA. 5 year old Darcy, who lives with recessive dystrophic EB (RDEB), helped to draw the raffle.

 

Sian Bartlett

Our Great Bookham Shop Assistant, Sian Bartlett, and a group of friends took part in a challenge weekend in Snowdonia involving…

• On Friday, the team went on the fastest zip line in the world at Penrhyn Quarry which gets up to speeds of 100mph and is 1555 meters long.
• On Saturday, they walked up Snowdon (Yr Wyddfa) via the Llanberis path (17km long with an ascent of 3,199 feet) taking 6 hours.
• On Sunday, the team went into the caves and zip-lined and abseiled in the dark.

Across the weekend, the team raised over £500 for DEBRA.

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Inflatable challenge

On the 27th July, Rebecca Wade and Steven Bates took part in a 10k inflatable challenge in Coventry.

Rebecca was inspired to take on this challenge for her daughter, who lives with EB simplex (EBS).

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Charity fishing match

On the 27th July, Kelvin Barker and Carrie-Ann Tucker hosted their annual fishing fundraiser at Reepham Fishery, which raised an incredible £1860 for DEBRA.

Their daughter Charli-Mai lives with EB and inspired them to fundraise for DEBRA.

Our daughter who is 8 has EB simplex. Which is a terrible condition luckily she has the milder side. Which is really challenging on a daily basis for her and us. I can not even comprehend the higher spectrums. DEBRA has help our family so much with carpets, fans, a members weekend which was really helpful for daughter to meet others with EB and see she isn't the only one.

 

Jump in July

On 1st July, Wendy Garner-Hutchinson (Finance and Commercial Manager at Empro) took part in a skydive, raising £1,000 to help fight EB.

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Inspired to #BeTheDifferenceForEB?

Take a look at our fundraising ideas and resources, or get in touch with our fundraising team!