UsherKids Australia is a network established to advocate for children diagnosed with Usher syndrome, a rare genetic condition characterised by hearing loss or deafness, the progressive loss of vision and in some cases, vestibular dysfunction.
My son Louis was diagnosis with Usher syndrome when he was 3 1/2. After being born with a profound hearing loss, we knew there was something else wrong when he struggled to keep his head up, was late to sit, late to crawl and late to walk so we pushed for genetic testing. It was a very lonely time for our family as there was no support group to turn to, and many of our doctors knew very little about the condition. Since then I have been working with another parent in Melbourne to improve the diagnosis, education and support for families of children with Usher syndrome in Australia. We both had great difficulties navigating specialists, information and support for our sons after diagnosis and vowed to improve this path for families that follow us. Our support group, UsherKids Australia was officially formed in 2015 and our website www.usherkidsaustralia.com was launched in early 2016.
In the last 18 months we have managed to bring a greater awareness of Usher syndrome to our clinicians both in Melbourne and to the broader community, and continue to dedicate our time to the following areas:
You can contact us at firstname.lastname@example.org or through our website
UsherKids Australia Co-Founder