Cure Usher Syndrome raises funds for research into a cure for Usher syndrome, the leading cause of genetically inherited hearing and sight loss - and raises awareness of the condition affecting over 400,00 people worldwide.

Cure Usher Syndrome is a registered charity in England and Wales, number 1181293

❤️ Our Story & Why This Fundraiser Means Everything to Us ❤️

Our Bonkers Bingo Charity Night on Saturday 19th September 2026 officially sold out, and we are honestly overwhelmed with gratitude. Every single ticket bought, every donation made, every message of support, it means more than you will ever know.

Thank you from the bottom of our hearts for helping us make the night possible and for raising over £5K ❤️

We’re continuing our fundraising journey here, because this cause isn’t just important to us… it’s part of our everyday life.

My husband Kevin lives with Usher Syndrome, a rare condition that affects both hearing and sight. For our family, me, Kevin, Kelsey and Alfie, it’s something we see and navigate together every single day.

If you know Kevin, you’ll know exactly how incredible he is. You’d never guess, just by looking at him, the challenges he faces. He has less than 5% central vision. His peripheral vision is gone, leaving everything around him in darkness. Yet he still lip‑reads. He still smiles. He still chats away as if nothing is wrong. He still walks confidently, even though he quietly relies on us, his family and close friends to guide him through busy rooms, unfamiliar places, and everyday moments that most people take for granted.

He does all of this without a white cane, without hearing aids, because he’s not ready for the world to treat him differently. He’s only 46, and every day is a battle to live what feels like a “normal” life. His strength is unbelievable, but the reality is hard. The fear of being judged, pitied, or misunderstood weighs heavily on him, yet he keeps going, keeps fighting, keeps showing up with that same gentle humour and kindness that everyone loves him for.

Usher Syndrome is progressive. It doesn’t stop. But neither do we.

That’s why this charity means the world to us. It supports families like ours, funds vital research, and gives hope to people who are losing both their sight and hearing. Hope is everything and your support helps keep that hope alive.

Thank you for standing with us. Thank you for helping us raise awareness. And thank you for helping us make a difference for Kevin and for everyone living with Usher Syndrome.