WHAT IS USHER SYNDROME?
Usher syndrome is an inherited condition that involves both hearing loss and visual loss caused by Retinitis Pigmentosa (RP). A proportion of patients also experience difficulties with their balance. Usher syndrome is a rare condition that affects around 4 – 17 in 100,000 people worldwide.[1]
The condition is categorised into three subtypes depending on the severity of hearing loss and whether there are any difficulties with balancing. The three subtypes are:
- Usher syndrome type 1
- Usher syndrome type 2
- Usher syndrome type 3
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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"
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.
OUR RESEARCH
Cure Usher are proud to fund current leading research projects in the UK.
At present we have an agreement with University College London (UCL), to DIRECTLY fund Professor Mariya Moosajee MBBS BSc PhD FRCOphth, Professor of Molecular Ophthalmology at UCL Institute of Ophthalmology, for her groundbreaking work on Usher syndrome.
Quarterly payments are made with the proceeds direct from fundraising efforts that you all donate, empowering a meaningful difference in the search for a cure.
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.