Lisa Kearns joins UsherKids Australia Board, global celebrations for Usher Syndrome Awareness Day and wrap-up of Deafblind International Conference
Welcome Lisa Kearns to our Board
UsherKids Australia is thrilled to welcome Lisa Kearns to our Board. Lisa has been appointed as a Director alongside Hollie Feller and Emily Shepard. Lisa is a Research Orthoptist and Associate Genetic Counsellor who divides her time between The Centre for Eye Research Australia and The Royal Victorian Eye and Ear Hospital. Lisa's knowledge of Usher syndrome combined with her talent and passion for improving people's lives make her an incredibly valuable addition to the UsherKids team. She will bring new insights and help guide the organisation to continue to improve and expand its services.
Photo credit Anna Carlile
Usher Network Conference
Gold Coast, August 2019
UsherKids Australia was pleased to be part of the Deafblind International Usher Syndrome Network Conference on 11th and 12th August 2019 on the Gold Coast, Australia. The extensive two day program included speakers from all over the world, together with people from all areas of the Usher community covering medical research, psychology, employment, communication and social fields. The conference saw delegates from over 14 different countries attend, including professionals, seven of our own UsherKids families, as well as adults with Usher syndrome.
1. Pictured below is Emily Shepard (UsherKids Australia) with Usher Network Chair, Emma Boswell (Sense UK) with her interpreters Richard and Emma. 2. Raymond Wong (Centre for Eye Research) and Hollie Feller (UsherKids Australia). 3. Professor John Grigg (Save Sight Institute) chats with family members after his research presentation. 4. Multiple communication accessibility modes taking place during the presentations, including hearing loops, live captioning, British Sign Language, Auslan, American Sign Language, Spanish interpretation and Dutch interpretation. 5. The Usher Society "Shine a Light on Usher Syndrome" portrait exhibition draws a crowd during a break.
The Australian Inherited Retinal
Disease Register (AIRDR)
The Australian Inherited Retinal Disease Register (AIRDR) and DNA Bank is based at the Sir Charles Gardiner Hospital in Perth, Western Australia. It contains clinical and family history information for over 6,200 participants affected with an Inherited Retinal Disease, including 160 families with Usher syndrome. This is estimated to be only 15% of all Usher-affected Australians.
The Usher Project is currently recruiting more Australian Usher patients onto the registry to expand the knowledge of the genes and mutations involved in Usher syndrome in Australia. This information is essential for the progress of genetics research and the establishment of targeted therapies and clinical trials.
If you know someone who has, or suspects they have Usher syndrome, we encourage you to contact the AIRDR by visiting their website here or by downloading their brochure here.
The AIRDR team below.
Usher Syndrome Awareness Day
21st September 2019
We invite you to join the Usher Syndrome Coalition in celebration of our 5th annual global Usher Syndrome Awareness Day! In 2015, the Usher Syndrome Coalition declared the third Saturday in September as our global “Usher Syndrome Awareness Day.”
This day falls near the autumnal equinox in the northern hemisphere, marking the start of days that contain more darkness than light - a powerful metaphor for the threat of Usher syndrome and why we "Own the Equinox" each year at this time.
Here in Australia, as most of the country is welcoming the start of daylight savings, we embrace the additional daylight hours this time of year provides our Usher loved ones and the symbolic hope of a brighter future.