When a family hears the words progressive sight loss, everything shifts.
Stargardt disease, also called Stargardt's disease or Stargardt macular dystrophy, is a rare genetic eye condition that causes progressive central sight loss. Most families have never heard of it before diagnosis. There is no clear path to a support network or a community of families who understand the fear and the uncertainty.
Rare can feel incredibly lonely.
We see this across the vision loss community. Usher Kids UK, a charity supported by Fight for Sight through our Resilience Funding, works with families navigating Usher syndrome, a rare condition that affects both hearing and sight.
Parents there have described the isolation of managing dual sensory loss without ever meeting another child like theirs. Young people have spoken about the relief of finally finding peers who understand their experience.
Our research shows that people who are blind or vision impaired are three times more likely to experience loneliness than the general population, with children, young people and parents often feeling that isolation most deeply.
Connection is fundamental to wellbeing and resilience. That is why we invest in charities that bring people together, foster collaboration and create spaces for shared experience, alongside backing brilliant science, so that no one faces sight loss alone.
Through our Capacity Building Fund, we supported specialist charities to grow stronger and reach more families. Stargardt’s Connected is one of them.
“I didn’t know anyone else”
When Bhavna Tailor’s son was diagnosed with Stargardt’s disease at seven years old, she thought he might need glasses. Instead, she was told he had a progressive condition with no available treatment.
“I think my world just fell apart,” she said.
She asked whether there was a support group for Stargardt’s disease. There was not.
In the early days, the uncertainty felt overwhelming. What Bhavna wanted was simple, she wanted to speak to another parent who understood.
“I wanted to talk to other people. I wanted my son to talk to other people with Stargardt Disease. It was important that I meet people and see how they live their life, and create that community, which is what Stargardt’s Connected has done.”
That need for connection mirrors what families supported by Usher Kids UK have shared. The first time a child meets another young person with the same condition, something changes. Parents who once felt alone begin to share strength and practical advice.
So, Bhavna helped to build that community for Stargardt’s families. Stargardt’s Connected is now the only UK charity dedicated solely to supporting people and families living with Stargardt’s disease. It was founded to raise awareness, support the community and support research. At its heart, it exists to ensure that no family faces this diagnosis alone.
Strengthening community through capacity
Through our Capacity Building Fund, we invested in the charity’s ability to grow strategically and sustainably. Our funding enabled the employment of an Engagement and Operations Coordinator, strengthening the organisation’s reach across the UK.
This has meant regular, structured online sessions shaped by community feedback. Dedicated spaces for children and young people. Parent sessions that allow honest conversation about education, adaptation and emotional wellbeing. In person events that bring families together from across the country.
The impact is clear. Newly diagnosed families now have somewhere to turn. Young people who once felt isolated now meet peers who understand. Parents who once carried their fears quietly now share experience and hope.
Backing science and building hope
Stargardt’s Connected works closely with researchers and pharmaceutical companies, helping families understand clinical trials and emerging science. It bridges the gap between lived experience and research.
Alongside our capacity support, Fight for Sight has partnered with Stargardt’s Connected to fund a small grant awarded to Dr Rodriguez-Martinez. Her study aims to evaluate and validate child-friendly iPad-based visual function tests in patients with Stargardt’s disease. The small grants enable early-career clinical or research scientists to collect preliminary or pilot data for developing competitive follow-on funding applications.
Read more about our Small Grants
By backing promising projects and brilliant scientific minds, we are helping to move prevention, treatment and potential cures within reach. Although currently there is no cure for Stargardt disease, research is advancing and promising. Our optimism is informed by evidence.
Ten years on from her son’s diagnosis, Bhavna reflects on what she would say to the parent she once was.
“Please don’t worry. He will lead a full life.”
Living with Stargardt’s disease brings challenges. But isolation does not have to be one of them. Through our funding, we are strengthening organisations like Stargardt’s Connected and Usher Kids UK so families can find connection, confidence and hope.
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