3 weeks ago
Recent donations
3 weeks ago
Anonymous
+ £6.25 Gift Aid
1 month ago
Liza & Will
+ £6.25 Gift Aid
Amazing to do for such an important cause
1 month ago
Anonymous
+ £1.25 Gift Aid
An excellent effort in support of a very worthy cause
1 month ago
Jacqui Campbell
+ £1.25 Gift Aid
1 month ago
Jayne Jury
+ £2.50 Gift Aid
1 month ago
Cori and crew
Andrea
1 month ago
Charlie
+ £1.25 Gift Aid
1 month ago
Mums clients round two
Thanks for all the donations guys! :) xx
1 month ago
Huw Gwillim
+ £7.50 Gift Aid
Really well done Cori, this is brilliant :-)
Albi's "Thank you Debra UK" Fundraiser Run
Event date: 6th October 2024
Assorted people! are raising money for DEBRA
Share this page with your friends:
Our story
A group of misfit, (mostly unfit!) persons, unexpectedly running half a marathon this year. A (growing!) group of family, friends, colleagues and neighbours.
When Albi was born on 19th August 2023, the majority of us had no idea what EB (Butterfly Skin) meant.
For those who still don't, it is an extremely rare and incredibly painful genetic disease currently without a cure. Albi was born with Severe Recessive Dystrophic Epidermolysis Bullosa (RDEB-GS). Due to a complete absence of a protein called ‘collagen 7’ the slightest knock or friction caused by normal everyday activities will cause Albi’s skin to blister and/or shear. EB affect Albi both internally and externally, meaning blisters also form on his eyes, mouth and oesophagus.
There is however, in modern medicine constant breakthroughs. Money raised will help DEBRA to continue accelerating their drug repurposing program which hope to help ease some of EB's horrendous symptoms. Debra has also been a HUGE support to Albi's new parents with their community support team who have offered them anything from general advice to financial support. Debra are constantly looking to raise the profile and awareness of this disease.
As a thank you - a rather random bunch of people have come together to run 21K.
We hope to make even just a small contribution to Debra UK's latest appeal #BetheDifferenceforEB
Helping Debra UK continue its research and continue to support families facing a lifetime struggle with EB.
If it's £1 or £100 - it doesn't matter. 😀 we are grateful for any support or shares.
Thanks!
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
Smiling before the pain began!
1 month ago
Starting picture! Xx
1 month ago
Well, we made it! 💙
In the end 12 of our runners could still attend Race Day. 🦋
And all 12 made it round the course!
From one just shy 2 hours to 3.45, we all smashed out a personal best! 🎊
We were spread out in our Debra vests throughout the whole 13 mile journey!
A huge thanks to everyone that donated, fundraised and shared our stories!
We have hit our target, and more!
Thanks so much all!
Albi appreciates his mums medal too! 🫶
Xxxxxx
3 months ago
Evening Run
4 months ago
🦋
Woooohooooo TEAM! 💙
We have raised £850 in fundraising activities in July! 🦋
Alongside organic sponsors/donations.
☺️🙏☺️
This amounts to over a grand in a few weeks! 💙 Keep up the sharing and the training guys! 💙
We've got this! 🦋
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More great ways you can raise funds
We've smashed our £3,600 target - help us raise more
Your donations will help the great work DEBRA do.
Donate now