Stargardt’s Connected

1996. Bhavna Tailor

When Bhavna’s 7-year-old son Ethan was diagnosed following a routine eye test, Bhavna struggled to find further information on the condition.  This inspired Bhavna to set up ‘Stargardt’s Connected’ in 2019, which is the first charity dedicated to the disease that affects approximately 6,000 people in the UK. 

Stargardt’s primarily affects the central retina and in the early stages often causes blurred vision, progressing to an increasing loss of colour vision that can make reading, studying, driving and working a challenge. Often resulting in severe vision loss, there is currently no treatment for the disease but vision rehabilitation can help. 

The charity offers various resources to help both people diagnosed with Stargardt’s and their families, including information on benefits, grants and how to access them. They have launched a community register to help establish local networks and the data from the register will help researchers improve understanding of the disease’s impact on people’s lives. One of the charity’s aims is to fundraise towards seeking a cure and they host a range of fundraising activities, with plans to host the first ever ‘Stargardt’s Connected’ conference in March 2023.

In a personal letter to Bhavna, Prime Minister Rishi Sunak said:

 “From the experience of your own son, Ethan, you understand better than anyone the sense of shock and even fear that can come from being diagnosed with a rare genetic disease that you have never heard of.

 “So it’s fantastic that you have used this experience to create ‘Stargardt’s Connected’ – the first charity dedicated to supporting those living with Stargardt’s.

 “You have built a community of all those affected by this disease – raising awareness, providing support and contributing to the work of finding a cure.

 “As we mark Rare Disease Day, I am delighted to be able to recognise your service to others in this way.

Bhavna said:

“Thank you so much for the Points of Light Award. I am absolutely thrilled and honoured to have received it. It is particularly poignant to have this award on World Rare Disease Day as ‘Stargardt’s Connected’ supports those with the rare eye condition Stargardt’s. Collectively rare diseases are not rare as they affect 1 in 17 people.

“My son Ethan was diagnosed with a rare eye disease called Stargardt’s when he was just 7 years old. I had taken him to the opticians thinking he needed glasses and a few weeks later found out he had Stargardt’s, a genetic condition which meant he was going blind.

“Stargardt’s causes progressive central vision loss and affects approximately 1 in 10,000 people. There is no current cure or treatment. I was completely shocked and devastated and was scared about what the future would hold for him. Despite the heartbreak, I felt compelled to do something positive, and so set up ‘Stargardt’s Connected’, registering as a Charity in 2019.

“We are the only Stargardt’s Charity in the UK and have grown immensely and now have a global reach. We provide advice and information, connect the community with face to faceand virtual meet ups and have set up a patient register. We aim to raise awareness as well as fundraise for support and research.

“Through the charity I have met so many inspiring people and want to thank our wonderful Stargardt’s community and my fantastic board of Trustees, mentor, volunteers and fundraisers for their continuous support. We are a small but mighty charity, putting our community at the heart of our work and are excited for our journey ahead.”

See more about ‘Stargardt’s Connected’.