Finding support in the Usher Community
CUREUsher believes that by coming together with a collaboration of support from different organisations and groups worldwide, it can in turn lead to a much stronger, unified and a more supportive Usher community, one that everyone can benefit from. Peer usher support is absolutely vital to the wellbeing of anyone living with Usher syndrome, as well as their families and friends. A diagnosis of Usher syndrome can be a frightening and worrying time for many, as we know only too well. Whether you are a parent of a young child just recently diagnosed, or perhaps a young adult who received the diagnosis out of the blue, or no matter what the circumstances are, we believe you should never feel alone.
By providing these links to other like-minded organisations we hope that you will find that the Usher community is quite a large one, and one that you may find the support that you may be seeking for, as well as the many possible opportunities to engage with others who are on the same journey as you are.
Usher Kids UK
Usher Kids UK has been set up to support, inform, connect and advocate for children with Usher syndrome and their families.
The diagnosis of Usher syndrome can raise lots of questions for families. We hope that Usher Kids UK can help point them in the right direction in their journey to find answers to those questions, and help build confidence in the path ahead for their child.
Stichting Ushersyndroom (The Netherlands)
Our Mission: Collect funds and donations for stimulating scientific research on Usher syndrome with main goals; better diagnosis, developing a treatment for Usher syndrome and improve quality of life and wellbeing. Developments in genetic testing and gene therapy is improving rapidly.
In The Netherlands, the first positive results for people with Usher syndrome have already recorded. These developments offer hope for a future treatment for people with Usher syndrome.
Usher Syndrome Coalition
The Usher Syndrome Coalition is working to raise awareness and accelerate research for the most common genetic cause of combined deafness and blindness, while providing information and support to affected individuals and families.
The Coalition believes the first step to finding viable treatments for Usher syndrome is the development of an Usher syndrome community.
The Usher Syndrome Coalition aims to find, support and connect the 400,000+ people living with Usher syndrome worldwide with researchers, vital information, and others in the Usher syndrome community.
UsherKids Australia was formed in 2014 by principle founders Emily Shepard and Hollie Feller. Both are mums to young boys diagnosed with Usher syndrome. With the advances of hearing screening technologies over the past few decades, babies born with a hearing loss can be detected in the first few days after birth. This allows for early hearing aid fitting, early intervention and investigation into the cause of hearing loss. Historically the diagnosis for Usher syndrome came in the second decade after the onset of Retinitis Pigmentosa, but with genetic testing advancements, it allows conditions such as Usher syndrome to be diagnosed at a much earlier age.
The earlier diagnosis of children with Usher syndrome in Australia created a gap in the knowledge and support services available. UsherKids Australia was established with the main purpose of bridging this gap.