My Story

Hi family and friends,

I'm extremely honoured to be running the London marathon this year in support of a truly amazing cause, Cure EB. 

100% of donations to Cure EB goes towards funding research for EB (epidermolysis bullosa) a group of rare skin conditions. EB is also sometimes known as the 'butterfly' skin disease given sufferers have chronically brittle skin similar to that of a butterfly.

EB is devastatingly debilitating, affecting the way in which the skin barrier is held together causing very painful blistering and peeling similar to 3rd degree burns. It can affect every part of the body lined with 'skin' cells - so eyes, mouth, airways, stomach and so on. Currently, the quality of life of those who have the disease is severely impacted with constant pain and poor prognoses as the fast skin breakdown can lead to skin cancer. 

Cure EB's mission is to drastically improve the availability of treatments for EB sufferers, who are currently only managed with 'simple'  dressings, creams, antibiotics and pain medication for the open wounds. They fund research covering the latest in EB related genome editing, topical drug administration, skin grafts, 'spray on' stem cells and the positive news is that awarenes and research is leading to results. Filsuvev was approved by the FDA and NICE as a cream to accelerate wound healing. While it's not a cure it's a small step towards improving the quality of life of those with the disease.

Any small donation is enormously appreciated and will help to continue to move the needle in EB research.