Mum-of-four to run sixth marathon in six months on Mother’s Day to raise money to fight her daughter’s life-limiting condition
Sharmila Collins will sacrifice breakfast in bed on Mothering Sunday (March 14) to run 26.3miles around Regents Park, London, to raise funds to cure her daughter’s painful genetic skin disorder Epidermolysis Bullosa (EB).
Sohana, 18, was born with the rare condition that causes dangerously fragile skin. Sharmila has devoted much of her life since then fighting to find a cure.
Sharmila, 52, says: “Sohana has never known a day without pain but she amazes us with her sunny, positive outlook on life. The least I can do is forego my Mothers Day lie-in.
“In the pandemic normal fundraising events like dinners or sponsored walks have been impossible. I had to think creatively about what I could do. I ran the virtual marathon in October and felt OK afterwards so I kept on doing marathons on my own. I chose Regents Park because it has toilets!
“I hate running but I hate EB more. I intend to keep running monthly until I have raised £1million.”
Sharmila, who has four daughters, set up Cure EB (then known as the Sohana Research Fund) in 2011. The charity has raised millions to fund research. It is a race against time to find a cure that will save young people of Sohana’s age.
EB affects 500,000 people around the world. It is caused by a genetic mutation that makes a patient’s skin extremely fragile. Any friction to the skin causes open wounds and blistering and can lead to skin cancer. Daily management, including painful popping of blisters and bandaging, is required.
Cure EB is helping scientists make headway in vital research. The charity has funded the first half of a clinical trial into gene-corrected skin grafts that have the potential to permanently heal damage.
Find out more about Cure EB here: https://www.cure-eb.org/
Sharmila is available for interview.
Sam Carlisle at Cause Communications