My daughters are friends at school with a girl called Poppy, who suffers from Epidermolysis Bullosa - also known as `butterfly skin' or EB. Here's a video of Poppy from a few years ago -- https://youtu.be/N0jW9DMy358.

EB is a very painful, incurable skin condition that causes blisters at the slightest friction and can lead to wounds that are like having very severe burns.

It's a cruel illness and I'd like to do something to help find better treatments and ultimately a cure. Please, if you can, donate! Any amount, large or small, is very much appreciated.

My skydive, weather permitting, is due to be from 15,000 ft over Old Sarum in Wiltshire on June 1.

Many thanks, Colin

PS, there is lots of great information about EB here:

Cure EB charity home page
https://cure-eb.org/

A short BBC film about living with EB
https://www.bbc.co.uk/iplayer/episode/p06jcwm4/living-differently-series-4-5-me-and-my-butterfly-skin

An interview from The Guardian with Sharmila Collins, founder and driving force behind Cure EB (the charity was formerly known as the Sohana Research Fund, named after Sharmila's daughter)
https://www.theguardian.com/lifeandstyle/2014/nov/22/our-fight-to-save-sohana-research-fund

About research into EB (including a helpful video by the actor Damian Lewis (who I think of as the bloke out of Homeland (probably because I'm old))
https://cure-eb.org/research/

Links to other coverage about EB
https://cure-eb.org/press/

About Cure EB
EB is a painful skin condition that causes blisters and wounds all over the body. It is like having severe burns outside and inside that eventually lead to skin cancer.

There are up to 5,000 adults and children living with EB in the UK (500,000 worldwide) and yet few people have heard of it. Those who have realise what a devastating impact it has on sufferers and their families. It is unrelenting in its pain and unrelenting in the distress it causes.

Currently there is no cure but enormous strides have led to the brink of gene therapy treatments and cures. Clinical trials have started around the world aiming to treat EB. A very important gene corrected skin graft trial has started in Paris which is one of the projects funded by Cure EB.  The charity's name is its mission – to cure EB.

(Please note: I think the correct current estimate for the number of people living with EB worldwide is 500,000, not 5,000,000 as I had in the penultimate paragraph above. I've amended that as of March 7 - with thanks to my colleague Lisa for pointing that out and apologies for the error.)