We’re running the Great North Run 2025 to raise vital funds and awareness for Cure Usher Syndrome!

In September 2022, beautiful Phoenix was diagnosed with Usher Syndrome, a rare genetic condition that can cause hearing and sight loss over time.

Phoenix was born with permanent hearing loss, but she meets every challenge with courage and determination. With the help of specialist equipment and unwavering support, she’s thriving! She’s a bright, confident, and charming little girl who lights up every room she enters.

Her journey hasn’t been easy, but Phoenix’s resilience is inspiring. She works tirelessly to access the world around her, things many of us take for granted, and she does it all with a smile.

From recent genetic testing, we now know that Phoenix’s condition will likely lead to progressive vision loss during her teenage years.

Phoenix is lucky to have her incredible mum, Lauren, who is an amazing advocate, always breaking down barriers, raising awareness, and ensuring Phoenix grows up empowered and fearless.

There is currently no cure for Usher Syndrome. That’s why we’re supporting Cure Usher Syndrome, an incredible charity dedicated to funding research and supporting families like Phoenix’s. Every penny raised goes directly toward finding a cure and helping children like Phoenix live full, independent lives.

Usher Syndrome is so rare that many families have never heard of it until diagnosis. That lack of awareness means limited support and that’s why your donation matters so much.

We’re running for Phoenix, our inspiration!

Please support us in any way you can.