In September 2015, my son Ethan was diagnosed with Stargardt’s disease when he was just seven years old; a condition we had never heard of. Being told that he was losing his eyesight and that there was no cure or treatment for Stargardt’s disease was the most devastating news we had ever been given.
Despite the heartbreak, I knew that I couldn’t sit and do nothing. It was the apparent lack of information and awareness of Stargardt’s disease that drove me to contact the NIHR Moorfields Biomedical Research Centre and inspired the idea for a patient information day about Stargardt’s disease.
In March 2017 we held Stargardt’s Day, where patients, healthcare professionals and patient charities had the opportunity to get together and share their knowledge and experience about this life-changing condition. The day was a massive success with many people living with Stargardt’s disease having an opportunity to meet others with the condition for the very first time.
Stargardt’s Day made me realise that we couldn’t stop now. With the help of a few others, who along with myself helped to shape the Stargardt’s Day agenda, Stargardt’s Connected was born.
Stargardt’s Connected is committed to running events and activities that bring the Stargardt’s Community together as well as to raise awareness of Stargardt’s disease and funds for research. Although there is no current treatment for Stargardt’s, the continuous groundbreaking research being undertaken in the form of drug therapy, gene therapy and stem cell therapy means that a treatment for Stargardt’s is increasingly looking more optimistic.
Please follow our cause and share our story to raise awareness and funds. With your help, we will make a difference for people with Stargardt’s disease and their families!
A fuller version of story can be read here.