Meet our volunteers: Jane and Cindy

Both live with retinitis pigmentosa (RP), but their experiences of sight loss – and how it has unfolded over time – have been different. Jane was diagnosed later in life, after years of coping with changing vision and several eye conditions. For Cindy it took many years to fully understand the long term impact of RP, after experiencing problems with her sight from childhood.

Connecting with Retina UK marked a real turning point for Jane. After struggling to find support locally, she reached out to the charity. Through webinars, phone calls and online peer support, she found a space where she could speak openly about her experiences. “I didn’t realise how much I needed to talk,” she reflects.

As her confidence grew, Jane began attending more events and sharing her story. Volunteering felt like a natural next step. It offered a way to give back, while also staying connected to a community that had  supported her when she needed it.

Cindy’s relationship with Retina UK stretches back many years. Alongside a demanding career in social work, university studies and family life, she wanted to volunteer in a way that felt meaningful but flexible. Retina UK offered exactly that.

Cindy’s professional skills, personal experience and the training provided by Retina UK all come together in her volunteering. Helping to shape a brand new peer support group has been a particularly rewarding part of that journey.

Their shared love of reading became the spark for the ‘Talking’ Books Peer Support Group. Audio books play an increasingly important role in both of their lives, offering enjoyment and independence as reading print became more challenging. It was clear that others might be in a similar position – unsure where to start, what platforms to use or simply looking for recommendations.

The idea for a new group grew from those conversations with input from other members of our community. Together, Jane and Cindy worked with Retina UK to create a supportive, informal space where people could explore audio books at their own pace. From its very first meeting, the response showed just how much the group was needed.

After just two meetings, the group has attracted strong interest. Dozens of people joined the initial sessions, with many choosing to stay connected through a WhatsApp group that continues to fill with friendly messages, shared tips and book recommendations. Some members are keen to learn about devices, apps and accessibility features, while others are simply happy to chat about the stories they enjoy.

What Jane and Cindy value most is the tone of the group. There is no pressure to speak, no expectation to attend every meeting and no “right” way to take part. People can drop in, listen quietly or join the conversation when they feel ready. “That flexibility is so important,” Jane says. “Everyone’s circumstances are different.”

Supporting others can be emotionally demanding, and they are realistic about the challenges of volunteering, especially within peer support. They see the powerful impact of small, shared moments – a helpful suggestion, a kind response or a laugh over a favourite book.

As this new peer support group continues to grow, Jane and Cindy hope it will become a lasting source of connection. Through stories, conversation and community, they are helping others rediscover confidence, curiosity and belonging – reminding everyone that even when vision changes, the joy of books, and being part of something new together, remains.

You can find out more about the various peer support groups available from Retina UK at RetinaUK.org.uk/groups. All of our groups are welcoming, safe and friendly places for people to share experiences, tips and information and form friendships.