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Finding a cure for EB

420. Sohana Collins

A teenager has helped raise over £3.5 million to find a cure for a debilitating disease that will eventually claim her life.

Sohana Collins, 13, whose courage has inspired the help of celebrities including Kate Moss, Damian Lewis and Benedict Cumberbatch to raise funds through dinners, galas and a social media tongue twister challenge. All the money goes to researching a cure for a skin disease that makes her skin so delicate even the slightest knock, bump or scratch causes blisters and painful third degree burns.

Sohana suffers from recessive dystrophic epidermolysis bullosa (RDEB) that means she lacks the protein needed to hold her skin together. The disease could lead to skin cancer and claim Sohana’s life before she reaches middle age. Despite her situation, Sohana, who lives with her mum, dad and three younger sisters, inspires everyone with her attitude. Her courage is the inspiration behind the fund.

To support the fundraising she writes letters, poems and stories to put in brochures, appears in videos, and most recently was the face the EB tongue twister challenge. She also very active on social media, running the fund’s instagram account and creating a Christmas video.The money has helped fund a treatment trial where 10 children received bone marrow stem cells, as well as a gene therapy trial this year.

Prime Minister David Cameron said:

“Sohana has shown tremendous courage and selflessness in not letting the pain of her condition stop her from working tirelessly to fund research that will help other young people like her. She has raised a fantastic amount of money and inspired people around the world to join in her events and social media campaigns. I am delighted to be able to recognise Sohana as a Point of Light.”

Sohana said:

“It was really exciting to go to Downing Street and to meet the Prime Minister. It was such a great surprise to win the Point of Light award.”

The daily Points of Light award recognises outstanding individual volunteers - people who are making a change in their community.

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