Largest meeting of families with Usher syndrome

Posted on: Monday 12 August 2019



Three children playing bongo drums whilst sitting on chairs

Over 70 people gathered in Birmingham for the largest meeting of families living with Usher syndrome in the UK.  Retina UK and Sense supported Usher Kids UK to hold its first family event in June.

Apple hosted a workshop for teenagers to show how mainstream technology can help with mobility and independence, whilst younger children took part in a Cadbury’s World workshop. All children enjoyed sports thanks to Birmingham City FC.

Parents and carers heard from 15 professionals discussing strategies to help with some of the challenges facing children living with Usher syndrome and three inspirational young adults spoke about their experiences.

Usher Kids UK founder, Chloe Joyner, said: “The majority of the people attending had never met another person facing the same challenges
as them. By coming together, we can share experiences and develop networks of support, whilst also finding our collective voice to champion the needs of our children.”

Retina UK’s Matt Carr, said: “It was a really positive event and a fantastic example of how Retina UK works with other groups to make the biggest difference for our community.”