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Total raised so far

52%

£7,938.00 of £15,000 target +£1,316.75 Gift Aid See breakdown

Recent donations

4 hours ago

Anonymous

£5.00

7 hours ago

Mike and Pauline Watkins

£30.00

+ £7.50 Gift Aid

Good Luck Team Albi 💙🦋

8 hours ago

Wendy Grabham

£10.00

+ £2.50 Gift Aid

11 hours ago

ITU Albi Bands

£17.00

Good Luck Team Albi 🦋

11 hours ago

Ceri & Lisa Mashlan

£237.00

🦋Stall at Llantwit for Albi 🦋💙

11 hours ago

Anonymous

£8.00

+ £2.00 Gift Aid

13 hours ago

Lisa

£20.00

+ £5.00 Gift Aid

13 hours ago

Sam & Rachel

£40.00

+ £10.00 Gift Aid

2 days ago

Anonymous

£20.00

+ £5.00 Gift Aid

Can’t make Fayre so donation

3 days ago

David Walters

£30.00

+ £7.50 Gift Aid

Team Albi - Kenya Trek for Epidermolysis Bullosa

Event dates: 26th October 2024 – 2nd November 2024

Ceri Mashlan are raising money for DEBRA


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Our story

Team Albi , Mark, Ceri and Cara are fundraising for DEBRA – The Butterfly Skin Charity. We have chosen this charity as it is close to our hearts. Our Daughter Erin & Partner Calum gave birth to their beautiful baby boy, Albi Ward-Blackman in August 2023.
 
Albi was born with Severe Recessive Dystrophic Epidermolysis Bullosa (RDEB - GS). This is an extremely rare and incredibly painful genetic skin disease; The slightest knock or friction caused by normal everyday activities will cause the skin to blister and/or shear. EB effects Albi both internally and externally meaning blisters also form on his eyes, mouth and oesophagus. Without a cure those with severe forms of EB are at a high risk of developing a aggressive form of skin cancer - Squamous cell carcinoma (typically in their 20s) which is usually fatal. Being such a rare genetic disease raising awareness and helping to fund research and trials is critical to #StopThePain that Albi and others born with EB live with every day.
 
To help raise awareness and money for this amazing charity, the three of us will be completing a 5 day trek through Kenya this October (2024); we will be walking along the Great Rift Valley which runs the whole length of Kenya. We will be trekking up to 7 hours each day, this is going to be a real challenge and completely out of our comfort zones. To ensure we are prepared we are starting our training this month (February 2024). We are joining another incredible Charity – Velindre Cancer Centre on our trek through Kenya and are really look forward to completing this challenge together.
 
This will be a self-funded trip, meaning every penny that we raise will be going directly to DEBRA – The Butterfly Skin Charity. The money raised will massively help DEBRA to continue accelerating their drug repurposing programme, fund life-changing treatments and provide vital community support and healthcare to the EB community who suffer daily from this dreadful condition. 
 
In the lead up to the Kenya trek, we will also be organising other events such as a Charity Ball. We also look forward to participating in a Sky Dive organised by Tracy . Please keep your eyes peeled for our fundraising events throughout the year and when we list our sky dive participants.
 
As a family, we are so grateful for any support you can give us; every Like, Share, Sponsor or penny donated makes a huge difference, and will help Albi and all those that suffering with this disease on a daily basis. We must #StopThePain by finding a cure for EB.


Thank you for checking out our page. Making a donation is fast, easy and secure thanks to Give as you Live Donate. They'll take your donation and pass it onto DEBRA.

Our updates

1 month ago

Team Albi - just under 5 months until we trek 5 days through Kenya in aid of DEBRA UK - The Butterfly Skin Charity -so training is now starting to ramp up to ensure we complete the challenge in one piece.

Albi was born with Severe Recessive Dystrophic Epidermolysis Bullosa RDEB-GS.
It is a very rare genetic disease that effects Albi both internally and externally. Albi is essentially missing the *glue* (technically known as collagen 7) which attaches the skin to his body; the slightest bit of friction will cause his skin to blister and/shear.
Albi was born with significant skin loss at birth, he has to have daily dressing changes to help his wounds to heal and the minimise infections. Albi will wear bandages every day to help protect his skin and reduce new wounds and blisters caused by everything day friction.

EB is such a rare genetic disease where there is currently no cure or real treatments . With severe cases like Albi’s this is usually fatal in their 20s to 30s  as they - this is why fundraising is so important to help better the lives of those living with EB raising awareness and funds is critical to #StopThePain  that Albi and others born with EB suffer everyday,

Image uploaded with update

1 month ago

🦋💙Team Albi continue to raise awareness for Albi and all those that suffer with Epidermolysis Bullosa. We are selling Albi bands to support the Charity DEBRA UK to work towards finding a cure for this extremely rare and painful condition. Thank you for your continued support, as a family we are so grateful x 🦋💙

Image uploaded with update

2 months ago

Albi's Butterfly Ball in aid of DEBRA UK

Tickets on sale from Thursday 2nd May at 6pm

Please click the link below for more information and to book your tickets.
buytickets.at/teamalbiinaidofdebrauk/1223000

We as a family are so grateful for all the support that has been shown so far. The ball will be a great night; our aim is to continue to bring the much needed awareness and funding for those living with Epidermolysis Bullosa (EB).

We would also like to say a special thank you to Coed y Mwstwr Hotel Bridgend who are kindly hosting the event and have been incredibly supportive.

A thank you to Karen for Panache Weddings Ltd who will be decorating the venue for us.

Image uploaded with update

2 months ago

🦋 700 of these arrived today as we continue to support and raise awareness of Epidermolysis Bullosa for Albi and all EB sufferers 🦋
Will be asking some local companies to have these in charity boxes around the area soon. DEBRA UK

Image uploaded with update

Ceri Mashlan are fundraising for

DEBRA

Charity number: 1084958

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