Jul 15 2023 Sohana is 21!
When Sharmila and James Collins’ daughter Sohana was born in 2002, there was little prospect of an effective treatment for EB. In 2011, they set up Cure EB (formerly the Sohana Research Fund) to fund research into effective treatments, and ultimately a cure for EB.
Sohana is now 21 and the EB research landscape has changed. Cure EB has raised over £10 million, and continues to fundraise, with 100% of all donations going directly to fund our research projects.
In the last year, two topical wound treatments (Amryt Pharma’s Filsuvez and Krystal Biotech’s B-VEC) have been approved in Europe and the U.S., respectively. But much work, and funding, is still needed to create more effective treatments for EB and associated conditions such as squamous cell carcinoma, and to find a permanent cure for all types of EB
Our beautiful Sohana turns 21 today. Since she was born her dark, curious, intelligent, humorous eyes have bewitched us. When I knew she had RDEB, I held her close and whispered 'be happy little girl' over and over again, not knowing what her life would hold. She continues to astonish us with her resilience and fight, living beyond EB. Happy Birthday gorgeous girl!
Find out how you can support our mission to find a cure for all types of EB.