Building a community: Making connections at UsherKids conference

26 September 2018
Associate Professor Megan Munsie engaging with a group at the UsherKids Australia Connections Conference
The 2018 UsherKids Australia Connections Conference 2018 was held on 14 September at the Larwill Studio in Parkville. The Conference provided Australian Usher children and adults, and their families, an opportunity to connect with each other as well as clinicians, researchers and services providers. 

The conference was held to coincide with the global Usher Syndrome Awareness Day and featured a moving photography exhibition from The Usher Syndrome Society, an organisation from the USA that uses the arts to raise awareness and funds for Usher syndrome by using portraits of those with the condition at events across the globe.  

After hearing from Mark Dunning the Chair of the USA Usher Syndrome Coalition, delegates than had an opportunity to delve deep into the science behind Ushers syndrome.

First up was Dr John Ruddle, paediatric and Genetic Ophthalmologist consulting at Royal Children’s Hospital and Royal Victorian Eye and Ear Hospital, who provided an overview on the genetics of Ushers Syndrome.

Usher syndrome is a rare genetic condition characterised by hearing loss, the progressive loss of vision and in some cases, issues with balance. The loss of vision is caused by a disease called Retinitis Pigmentosa, which affects the light sensitive area of tissue on the back of the eye.  

Stem Cells Australia’s Associate Professor Megan Munsie and Lisa Kearns, a research Orthoptist at the Royal Victorian Eye and Ear Hospital and Centre for Eye Research Australia, then unravelled the science and research activities underway around the globe, including in Australia. Megan and Lisa explained the steps involved in moving a project out of the lab and into a clinical trial and reflected on the importance of “doing your research” to ensure that patients understand the nature of an ethical & well-regulated research project. 

The program included an update from the International Usher Syndrome Symposium which took place in Germany in July 2018, as well as inspiring Usher stories from our ambassadors and the progress of Australian Usher syndrome research. 

Emily Shepard and Hollie Feller, mothers of children with Usher syndrome, set up Usherkids Australia four years ago to provide a network for other families with children diagnosed with the same condition as their sons. UsherKids strives to improve the diagnosis process, educate professionals and support services, and build a community for families connected by this rare condition. 

Hollie Feller and Daniel Feller also founded Genetics Cures Australia, which has recently partnered with Stem Cells Australia, to work with an expert team of doctors and scientists to investigate Retinitis Pigmentosa, and possible treatment options. 

Click here to find out more about UsherKids and to watch some of the presentations from the 2018 Connections Conference.