Ms Emily Shepard1
1Usherkids Australia, Mordialloc, Australia
Biography:
Emily Shepard, a committed advocate for equity and inclusion, holds a Master of Public Health and founded UsherKids Australia to support children with Usher syndrome and their families. Drawing on her experience with her son, Louis, she leads important research including parental support and clinical awareness of Usher syndrome. Emily is involved in numerous initiatives across the deaf, vision loss, disability, and rare disease sectors, working to improve services, advocate for policy changes, and enhance community resources. Her leadership is widely recognised, and she continues to champion accessibility and inclusion through her diverse efforts and collaborations.
Abstract
My son’s diagnosis of Usher syndrome profoundly altered my family’s life. Confronted with the dual challenges of profound deafness and impending vision loss, our future felt overwhelmingly uncertain. The emotional impact was compounded by the absence of a clear support pathway, leaving us grappling with how to address both our son’s needs and our family’s well-being.
In the midst of our search for help, we were met with a lack of structured support for Usher syndrome. The advice to “go home and google” left us isolated, and existing services were reluctant to engage due to our son’s current level of vision. The broader implications went unaddressed, underscoring the gaps in available support systems.
Our perspective shifted dramatically after attending an Usher Syndrome Symposium in the USA, where we encountered knowledgeable clinicians, supportive parents, and dedicated researchers. This experience was pivotal in shaping our response. In collaboration with another parent, we founded UsherKids Australia, a crucial initiative providing comprehensive support for families of children with Usher syndrome in Australia.
Our journey has led to partnerships with various Universities, with recent research on clinical awareness, and the support needs of parents of young children with the condition. This presentation will share my journey from the initial shock of an Usher syndrome diagnosis to founding UsherKids Australia, highlighting the basics of the condition, gaps in support and the gains made through advocacy and research. It will outline strategies for improving clinical awareness and developing targeted support programs for families.