Every fingerprint is unique.
Every person is unique.
Our Mission:
"Cure Usher find and fund leading research on Usher syndrome, support and advocate with respect, and aim to provide meaningful, equitable impact throughout the journey for those living with Usher syndrome"
ABOUT US
Cure Usher grew from the lived experiences of people who know Usher syndrome personally. Everyone involved has felt, in one way or another, the worry, uncertainty, and heartache this rare genetic condition can bring. That shared understanding is what drives our commitment to supporting research and moving closer to a cure. Our community includes parents, families, friends, and supporters who recognise the urgency of this work and stand together in hope and determination.
Our purpose is to support the health and wellbeing of everyone living with Usher syndrome, the leading cause of combined hearing and sight loss. We aim to provide clear, accessible information for those affected, to fund thoughtful and innovative scientific research into its causes, treatments, and potential cures, and to share new knowledge that may help improve lives around the world.
We feel genuinely honoured to offer guidance and practical support to individuals and families touched by Usher syndrome, whether directly or indirectly. These connections strengthen our community and remind us why this work matters. We also strive to raise awareness of the condition and to advocate for the rights, recognition, and inclusion of people with Usher syndrome, ensuring their experiences help shape policy, research priorities, and public understanding.
OUR STORY
How it all began
Cure Usher was founded by Jo Milne, a remarkable advocate who lives with Usher syndrome herself. Driven by her own experiences, Jo recognised the urgent need for awareness, representation and research. She set out with a clear vision: to amplify the voices of those affected and to push for meaningful change.
Through her tireless efforts, Jo built the foundations of Cure Usher.
She worked across healthcare, government and parliament to shine a light on the realities of deafblindness, ensuring that those living with Usher Syndrome were no longer unheard. Her passion inspired many, creating a charity rooted in hope and determination.
In 2025, Jo stepped down from her role as founder to pursue a new chapter. While she may no longer lead the charity, her legacy remains at the very heart of Cure Usher.
Today, the charity is carried forward by a dedicated board of trustees and team who are committed to continuing the mission Jo began. Together, we are united in striving to raise awareness, fund vital research and work towards a future free from Usher Syndrome.
What started with one person’s vision has become a powerful collective movement. Cure Usher began with Jo Milne and today it belongs to us all.
DONATE & SUPPORT
Currently, there is no cure for Usher Syndrome.
Your generous donations are helping to find a cure for Usher Syndrome, as well as supporting people with Usher Syndrome & their families.
You can donate and support us through various methods including: JustGiving, Enthuse and direct via Bank Transfer.
Thank you again for all of your support.
The Cure Usher Team.
DROP US A MESSAGE
If you would like to get in touch, we’d love to hear from you!