Stargardt’s Connected exists to raise awareness, give support and to do what we can to progress towards a cure.
We are here to provide information to families affected by Stargardt’s, signpost them to available support, inform of latest research and also to promote a Stargardt's community which we hope will assist in driving essential research forward.
My son Ethan was diagnosed with Stargardt’s when he was just seven years old in September 2015.
It was a condition that I had never heard of. Being told that he was losing his eyesight, and that there was no cure or treatment, was the most devastating news I had ever been given. Despite the heartbreak, I knew from the point of diagnosis that I could not sit and do nothing while my son lost his eyesight.
We were dismayed by the lack of overall support and awareness there was for his condition. Since his diagnosis, I have come across some incredibly helpful organisations and resources, and Ethan is a very happy positive boy.
Stargardt’s Day and the birth of Stargardt’s Connected
The lack of support and awareness for Stargardt’s that we discovered inspired the decision for a Stargardt’s Day to take place in March 2017. I felt privileged not only to be invited to speak, but to help shape the day too. This was a Patient Information day, where patients and professionals had the opportunity to get together and share knowledge and experience. The day was a huge success with many people living with the condition meeting someone else with Stargardt’s for the first time. It was after Stargardt’s Day that I realised that we couldn’t stop now, and Stargardt’s Connected was formed.
Although there is no current treatment for Stargardt’s, the continuous ground breaking research being undertaken in the form of drug therapy, gene therapy and stem cell therapy means that a treatment for Stargardt’s is looking increasingly optimistic. But there is still a huge lack of awareness, funds and support for the Stargardt’s community and this must change.
Stargardt’s Connected continue to fundraise, run events and activities for the Stargardt’s community, and raise awareness of Stargardt’s.
Raising awareness, Giving Support and Seeking a Cure
Please follow our cause and share our story to raise awareness and funds. With your help, we will get there!