Regent’s Park Marathon for CureEB
by Staff | NY Times Post | October 1, 2021
Damian Lewis urges fans to sponsor mum running London marathon to fund research into daughter’s rare genetic disorder. Mum Sharmila Collins is running London marathon on Sunday, October 3, 2021 around Regent’s Park to fund research for her 19-year-old daughter’s rare genetic disorder which causes her skin to wound and blister. This will be her twelfth marathon for her daughter, who suffers from Epidermolysis Bullosa (EB).
Sharmila, the founder of the charity CureEB, is desperately looking for a cure for her daughter Sohana’s devastatingly painful genetic skin disorder.
And despite saying she “hates running,” the mum is determined to keep going because she “hates EB more.”
Supporting the cause, Billions star Damian Lewis said, “I am extremely proud to be a patron of CureEB. The pain Sohana has to live with daily is unimaginable.”
“Her condition will worsen and we now have a race against the clock to find and fund effective treatment.” Sharmila is incredibly driven and relentlessly focused on improving not only her daughter’s life but also those of other children with this terrible condition. She has raised millions of pounds for research into EB, at times single-handedly. It’s hard enough to run one marathon but 12 in a year is extraordinary, particularly when Sharmila works so hard every day to find a cure for EB. I am in awe of her. Please sponsor Sharmila and help change the lives of these children and young people.””
If you’d like to sponsor, please donate to CureEB on their Just Giving page here
If text giving is easier, please text CURE to 70300 to give £3. Or you can text CURE 5 to give £5 and CURE 10 for £10.
Sohana Collins, 19, was born with the rare condition that causes dangerously fragile skin.
Her devoted mum Sharmila has spent much of her life since then fighting to find a cure.
Sharmila, 52, from Islington, North London, says: “Sohana has never known a day without pain but she amazes us with her sunny, positive outlook on life.”
“During 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 London marathon in October 2020 and felt OK afterwards so I kept on doing marathons on my own. I have run 26.4 miles around Regents Park, London, once a month since.”
“I hate running but I hate EB more. I intend to keep running monthly until I have raised £1million.”
HELP FIND A CURE
Mum-of-four Sharmila set up CureEB in 2011 – and the charity has raised millions to fund research.
Damian Lewis, who plays hedge fund boss Bobby Axlerod in Billions, has been an enthusiastic patron for CureEB taking part in the BGC Partners’ annual Charity Day in September to raise money.
EB affects 500,000 people around the world – and 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.
CureEB is helping scientists make headway in vital research and the charity has funded the first half of a clinical trial into gene-corrected skin grafts that have the potential to permanently heal damage.
Read the rest of the original article at NY Times Post here