Thanks for taking the time to visit my JustGiving page.

I found out about Cure EB when I came to work at ECC and met James Collins QC. His eldest daughter Sohana was born with Recessive Dystrophic EC (a particularly lethal type of EB) and the charity was founded by James and his wife Sharmila 10 years ago. I've been training for this swim all winter with one of my oldest friends, Kim (we started school together over 50 years ago!)
Some of our training locations are in the photo gallery but none as big as Windermere
Epidermolysis Bullosa (EB) is hard to say and 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 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 or cure for EB. 
The good news is that there have been promising early phase trials looking at stem cell and gene therapies which is incredibly positive and a cause for optimism; however substantial amounts of money are needed to allow these early trials to proceed first to clinical trials and then to treatments for all.
ANY donation of ANY amount will go towards this work and will make an incredible difference. 
Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving - they'll never sell them on or send unwanted emails. Once you donate, they'll send your money directly to the charity. So it's the most efficient way to donate - saving time and cutting costs for the charity.