On Saturday the 28^th of May I completed the Blenheim Triathlon with a number of parents from my son's school.  I know hard to imagine for a not so athletic individual like me!

This year we are raising money for a rare genetic skin blistering condition that has a devastating effect on its sufferers and their families. The disease is Epidermolysis Bullosa; hard to say, hell to live with.  In children born with the disease, the proteins that glue skin layers together are defective or even missing.  The slightest friction (a knock, a bump, a hug) can cause layers of skin to shear off, resulting in open wounds all over the body, both inside and out.  Children born with EB live with pain every moment of their lives and undergo hours of bandaging/wound dressings every single day. Sufferers who survive into adulthood often end up wheelchair-bound as young adults and diagnoses of skin cancer are dreaded, but common after the age of 20.  There is currently no treatment and no cure for EB.

Cure EB is a charity that was founded by parents local to my son's school, Sharmila and James Collins, 10 years ago.  James and Sharmila's eldest daughter, Sohana, was born with Recessive Dystrophic EB (a particularly lethal type of EB).  Every penny raised by Cure EB is poured into medical research; experts all over the world are pulling together to find a way of easing the suffering of EB patients. The good news is that there have been promising early phase trials looking at stem cell and gene therapies.  All of this is incredibly positive and a cause for optimism; however substantial amounts of money are now needed to allow these early trials to proceed first to clinical trials and then to treatments available to all.  And as  devastating as EB is, as a rare disease (less than 500,000 patients worldwide), it is never first in line for funding.

The team that participated in Blenheim Triathlon on Saturday 28 May was the school's largest ever, comprising an inspiring group of mums, dads, teachers, nannies and friends.  A second team of intrepid cyclists, led by the school's headmaster, cycled the 120km from Belsize Park to Blenheim on the day that the triathletes were competing. The boys at my son's school will also be doing their part with various fundraising activities at school. 
I appreciate that you all receive many requests like this one.  However, ANY donation of ANY amount is welcome.

For more information about the charity please see www.cure-eb.org. 

Many thanks!

Panos