When Bhavna Tailor took her seven-year-old son to the optician, she thought he might need glasses. Instead, she left with a diagnosis she had never heard of before. Her son has Stargardt disease, also called Stargardt's disease or Stargardt macular dystrophy, a rare genetic eye condition that causes progressive central sight loss.
In that moment, everything shifted.
“I think my world just fell apart there,” said Bhavna.
“I remember asking if there were any support groups for Stargardt’s, and I was told that there weren’t. But it was something the doctor himself was keen for someone to create. That’s when I thought I should set something up.”
Today, ten years later, Bhavna leads Stargardt’s Connected as the Chief Executive and Co-founder. It is the only UK charity focused solely on supporting people with Stargardt’s disease and their families.
From isolation to connection
Up to 1 in 8,000 people in the UK could be affected by Stargardt’s disease. Because it is rare, many families have never heard of it before diagnosis. This rareness often causes a sense of loneliness in families, unable to easily find others with the same diagnosis.
“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.”
Stargardt’s Connected was registered as a charity in 2019, built around three pillars: raising awareness, supporting the community and seeking treatments. The charity runs monthly community Zoom sessions shaped by families’ feedback, covering topics from understanding clinical trials to travel advice. There are dedicated sessions for children and young people to meet and interact.
Many form strong friendships and connections.
“One of our community members said, ‘I found my tribe.’ That’s exactly it. There’s a bit of magic when we all get together.”
There are also separate online spaces for parents navigating their own emotions. The charity also runs in-person events, such as family days and conferences, that bring people together from across the country.
For newly diagnosed families who are still processing, that sense of belonging can be life changing. Parents who arrive feeling hopeless leave with connection. Young people who felt different now have friends who understand exactly what they’re experiencing. And over time, those who once needed support begin offering it to others.
A mum and a CEO
“It’s hard watching your child lose their eyesight,” Bhavna says.
But alongside the challenges, Bhavna is optimistic. Her son is now studying for his A levels, doing well at school and wants to go to university. He loves cooking and hopes to become a chef.
“All those things I was worried about, I didn't have to be. It's not underestimating the challenges but knowing that there is a way through it.” Bhavna says.
That belief is the foundation of what Stargardt’s Connected stands for. It isn’t about dismissing the challenges, but about equipping families with resources, confidence and community so they can navigate life.
As Bhavna’s son often tells her, “The limit is what you choose”.
Her lived experience as a mum shapes her leadership every day. When newly diagnosed parents call, she truly understands what they are experiencing.
Bridging science and community
Alongside peer support, Stargardt’s Connected is committed to research.
The charity works closely with researchers, clinicians and pharmaceutical companies to bridge the gap between science and community. Families are supported to understand clinical trials and emerging research, ensuring knowledge is shared, and hope is grounded in evidence.
Through our Capacity Building Fund, Fight for Sight has supported Stargardt’s Connected to strengthen and expand its work, enabling the charity to employ an Engagement and Operations Coordinator and deliver support across the UK.
“The capacity funding from Fight for Sight has been a game changer for us,” Bhavna says. “It’s enabled us to provide regular sessions, increase our reach and support our community in the way they need.”
Fight for Sight has also partnered with the charity to give out a small grant focused on Stargardt’s disease, backing brilliant minds and bright ideas.
For Bhavna, funding research is deeply personal.
“There’s no treatment at the moment. Research is one step closer to changing that. The more we understand Stargardt’s, the more we can help our community.”
“You are not on your own”
When asked what she would say to the devastated mum she once was, Bhavna says, “Please don’t worry. He will lead a full life.”
She remembers the fear clearly. But now knows that her fear was rooted in uncertainty. It’s scary, but it’s not the end of the world. It’s about adapting. There’s technology. There’s research. And there’s community.
For families who have recently received a Stargardt’s diagnosis, her message is simple: “I don't want anyone going through what I went through, being in this whirlwind of not understanding. Not knowing who to turn to and who to talk to. At Stargardt’s Connected, people can just reach out to us. Don’t feel like you’re on your own. There is a community here. You can thrive.”
What started as one brave mom’s search for connection has turned into a national community, rooted in passion and hope.
Related content
