Hello!

Thank you for visiting our fundraising page. On 14th September 2008 we will be attempting to run the Robin Hood Half Marathon along with friends from the childrens wards at the QMC.  Training has begun and none of us are finding it all too easy!!

We will be running in aid of DebRA, the national charity working on behalf of people in the UK with Epidermolysis Bullosa (EB).

EB is a very rare genetic condition in which the skin and internal body linings blister at the slightest knock or rub.  The blistering may be confined to the hands and feet making holding things and walking extremely painful, but in more severe forms, all of the body is affected and the wounds heal very slowly, giving rise to scarring, physical deformity and significant disability.  In its most severe form, the condition is fatal in infancy.  Whilst considerable progress has been made in recent years in understanding EB and identifying the genes that cause the condition, there is as yet no effective treatment or a cure.

I came to hear of this devasting condition when brave little Brida was born. Brida suffered with Herlitz Junctional EB, the most severe type of EB, and sadly passed away earlier this year. DebRA has meant a lot recently to the family and friends of Brida. Through supporting DebRA, other families may benefit from the fantastic work of this charity.

Thank you! xxx