Albi's "Thank you Debra UK" Fundraiser Run

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!