SEE US.
HEAR US.
CURE US.
About us
We are a patient led, UK based, registered charity dedicated to directly funding research into and supporting people living with, Usher syndrome.
Our mission is simple, to raise awareness of Usher syndrome and directly fund research to help find a cure.
Usher syndrome is the leading cause of genetically inherited combined hearing and sight loss, with over 11,000+ living with the condition in the UK and an estimated 400,000 people worldwide.
People with Usher syndrome experience combined hearing and sight loss. It’s a rare genetic condition that affects everyone differently, Usher syndrome connects us, but doesn’t define us.
That’s why raising awareness of our community gets us out of bed every morning. Because all of us deserve to be understood.
Jo Milne and Steve White
Click on the DNA to jump to our research update . . .
Our Story. . .
Your story. . . . .
Whatever your concerns, your needs or wishes for now or the future - we all have a story to share, we are all connected and supported by each other living with Usher syndrome.
Click on the image to contact Us and discuss your journey with Usher syndrome.
CUREUsher Patrons
"We feel incredibly proud and privileged to be joint Patrons of Cure Usher and work alongside the inspiring Jo and Steve, and the team. The 'Story of Us' is a fantastic campaign so close to our hearts. We endeavour to spread awareness and raise funds for research in finding a cure for Usher syndrome"
Laura Norton and Mark Jordon
OUR THREE CORE
INITIATIVES ARE:
Represent Usher syndrome
As part of our efforts to raise awareness for Usher syndrome, Cure Usher teamed up with parliamentarians in 2021 to establish the very first All-Party Parliamentary Group (APPG), specifically for Usher syndrome. Fast-forward to 2022, and the APPG now has 50 MPs involved, allowing our community to have their voices heard in parliament.
Ultimately, our partners and supporters are the driving force behind increasing awareness of Usher syndrome among the wider public. It’s this kind of support that will ultimately lead to a cure.
You can watch the film below.
Refer for Usher syndrome
Cure Usher collaborated with the Northumbria Healthcare NHS Foundation Trust to create an educational film which seeks to raise awareness of Usher syndrome both within the NHS and the wider public domain. It aims to equip medical staff with the right knowledge to understand Usher syndrome and better support patients and their families. The film was produced by Northumbria Healthcare’s charity, Bright, with funding from NHS Charities Together.
Recognise Usher syndrome
From healthcare professionals to MPs, and the wider public, we work tirelessly to run numerous activities throughout the year to raise awareness for Usher syndrome. We want to make our red and white canes and dogs’ harnesses as recognisable as a stop sign.
Gallery
Click on the pictures for more!
