Last Wednesday was a special day in the Rotary Melbourne annual meeting Calendar, the Club’s Sir John Reid Community Service Award. It was a day where we recognised our Past President and Philanthropist in honouring significant volunteers in our Community.
Our Club has a deep association with Sir John Reid’s family. Online we were honoured to have family of our esteemed Past President: Daughter Margaret Ross, Grand-daughter and Chairman of the John T Reid Charitable Trusts; Belinda Lawson, incoming Chairman and Grandson of Sir John, Andrew McKenzie and Trustee - Philip Endersbee. Also, as our guest was a past Awardee, Libby Clarke.
Chairperson Helen Moylan gave a brief background on Sir John Reid and the Community Service Award.
Chair of the Community Welfare Committee Mary Barry then presented this year’s award to Emily Shepard, Director UsherKids Australia.
Mary noted that in speaking about her work with UsherKids, it was obvious from the outset that Emily is a passionate and committed advocate to making the lives of people and in particular children with a disability and their families better.
This all started with the birth of her son Louis, now 11 years old. Knowing something was not right, Emily spent the first three-and-a-half years her son’s life searching for answers. With a mother’s instinct and closely observing her son Louis’s interactions with his older sister, family and friends, Emily was convinced that her son had an underlying health issue. Born in a private hospital in Victoria that was one of the last hospitals to roll out newborn hearing screening, Louis didn’t have that check when he was born. Emily took him home and, because he was their second baby, she and her husband could tell there was something not quite right early on. Emily said they had a noisy three-year-old toddler but Louis didn’t seem to startle or be impacted by her and at eight-weeks-old, he was diagnosed with profound hearing loss. He didn’t tick off milestones either – he couldn’t hold up his head and was late to roll and crawl and sit up. It was clear to us that as well as hearing loss, there was something else going on for Louis. It was a complex journey, but eventually the Shepard family discovered Louis had a genetic disorder called Usher Syndrome. Emily at this stage in her presentation, feeling extremely emotional told us it was heartbreaking to also find out that as well as losing his hearing, Louis would in time also loose his sight.
With this news and challenge ahead of them, Emily and her husband discovered that when your child is diagnosed with Usher syndrome, families can be left feeling overwhelmed and alone. To make sure other families receiving the same diagnosis in the future do not go through this sense of isolation, Emily with the mother of another child with Usher Syndrome set up UsherKids Australia and made it their mission to help families like theirs.
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Emily Shepard
Emily Shepard co-founded UsherKids Australia (UKA), an organisation dedicated to ensuring children diagnosed with Usher syndrome (USH) and their families have access to an informed, committed and caring community of healthcare professionals and peer support networks to allow them to thrive in their everyday endeavours.
Emily has continuously volunteered her time to UKA since it was founded in 2016. She has volunteered at least 40 hours per week to this role, often providing support at night and on weekends to the families in the UKA community. Emily devotes her time to support newly diagnosed families and offers them advice and recommendations based on her own lived experience, to help reduce the isolation felt following a rare disease diagnosis. She organises conferences to improve the knowledge of healthcare providers working alongside children with USH, as well as social events to foster connection between parents, families and children to provide psychosocial support.
As a direct result of Emily’s tireless dedication to her volunteer work, the UKA community has now grown to over 50 families and 500 professionals. If it were not for Emily and her vision, there would now be many families in Australia trying to navigate the complex journey of supporting a child with a rare disease on their own. The assistance that UsherKids has provided to those families, and the clinicians supporting them is invaluable.
In addition to Emily’s work with UKA, she also volunteers her time through her involvement with numerous other organisations. Emily has been the lead organiser of the International Usher Network Conference which showcased research, experiences and best practices that are shaping the world for those with USH. She has also worked to ensure equality and equity in education, community participation, healthcare, future medical treatment, and research for children diagnosed with vision impairment. Emily works collaboratively with researchers to increase evidence-based practice, and mentors University of Melbourne genetic counselling students on community placement.
Emily’s commitment and contribution to the community makes her a most worthy recipient of Rotary Melbourne’s Sir John Reid Community Service Award. Her dedication to service above self truly reflects the values of Rotary.
The video of the meeting can be viewed by clicking this link: https://youtu.be/Z-h2MenvPFc
