After creating a website to help raise awareness, we at Web.com, wanted to take this opportunity to help draw attention to Robin’s journey in finding a cure for EB disease after the loss of his daughter.
Epidermolysis Bullosa (EB) is the name for a group of rare inherited skin disorders that cause the skin to become very fragile. Any trauma or friction to the skin can cause painful blisters. This is truly a remarkable story of a brave young girl and her ability to achieve remarkable milestones in her short life. And also about her Father and his remarkable achievements in the people he influenced, and the money he raised.
Robin and Alex’s journey started back in 1994 when she was almost 5 with a promise from Dad, that he would find a cure for a wicked inherited skin blistering condition she was born with. Robin gave up his lucrative business and started working full time on a voluntary basis for the charity DEBRA. This was tried to help raise the money needed to find a cure for EB in time to save Alex’s life.
Visit https://www.alexandraresearchfoundation.com/about-the-book to find out more, and order the book about Robin and Alex’s journey to find pioneering treatment for Epidermolysis Bullosa (EB) disease.
Some really moving testimonials about Robin’s charity work include:
“You have done so much over the years to raise funds for EB research and have my deepest admiration for your efforts. You were Alex’s greatest champion and I am sure she was very proud of your great love for her. With all my best wishes.” Gordon Brown.
“I encourage you to keep up the good work DEBRA is doing. Your efforts are an inspiration and I know that Alex would be proud. I wish you all the best”. Sincerely Bill Clinton
“To describe Robin as a tireless campaigner for the DEBRA charity completely understates his contribution. His efforts and dedication to the cause has been nothing short of phenomenal”. Simon Mackenzie-Smith former of DEBRA Appeals Council
Web.com with Robin and his family the best of luck with their charity work.