Sohana is a talented 13 year old, who we first came across as she was my eldest son's friend at nursery when they were both 3. She is a very special girl with a huge appetite for life - she loves to sing, read, and is a very talented artist.

Sadly, life has dealt her a very cruel hand and she suffers from a very acute form of RDEB - a horrific genetic skin condition which is like living with 3rd degree burns over 75% of your body, 100% of the time. This condition sadly only affects children, and life expectancy is cruelly short.

Amazing developments in genetic engineering and cell therapy however, have made a treatment and a cure a genuine possibility. The SRF has been set up by Sohana's parents to fund carefully targeted research to make this happen and relieve the suffering of thousands of unfortunate children, including Sohana.

I am running the London Parks half marathon to raise money for this exciting cause. Please donate what you can - 100% of all money raised by the SRF goes to fund research and not charity overheads, so your money will find its way to where it can count.