UsherKids Australia

07/10/2026

How can research make a real difference for children and young people with Usher syndrome?

This November, UsherKids Australia CEO Emily Shepard will join Asscoaite Professor Karyn Galvin and Professor Lauren Ayton AM at the Melbourne Disability Institute Disability Research Symposium to share the story of our research with the Usher community.

Our Usher syndrome research is one of four University of Melbourne interdisciplinary projects being showcased at the event. We’ll share how the work has evolved from listening to the experiences and priorities of families, children and young people with Usher syndrome, and how bringing community, researchers and clinicians together can turn those experiences into evidence, better support and meaningful change.

📅 Tue, 24 Nov, 10:30am - 1:30pm AEDT
📍 Science Gallery Melbourne or join online
🎟️ Free to attend

If you’re a parent, professional, researcher, student or simply interested in how lived experience can shape better disability research, we’d love you to join us.

For more information and to register, please visit https://events.humanitix.com/disability-research-symposium

02/10/2026

💙 Beyond the whirlwind of diagnosis: What parents wish you knew

A new article in mivision shares the experiences of three families navigating childhood vision loss, including UsherKids Australia CEO and co-founder Emily Shepard and her son, Louis.

Emily reflects on the day Louis was diagnosed with Usher syndrome, the gaps in information and support their family encountered, and how those experiences ultimately helped shape UsherKids Australia.

Almost 12 years later, families receiving an Usher syndrome diagnosis in Australia no longer have to navigate those early days alone.

The article also carries an important message for health professionals: look beyond the diagnosis, connect families with support early, collaborate across disciplines, and above all, have high expectations for our children.

As Emily says:

“Let your child dream and fulfil and experience all that life has to offer. It’s not a life sentence. It’s life changing, yes, but it’s absolutely not a life sentence.”

And Louis, now 16, is doing exactly that, writing his own future, passionate about music and hoping to become a history teacher. He is Louis first and has Usher syndrome second. It doesn’t define him.

Thank you to Michelle Hauschild and mivision for giving families the opportunity to share what we wish health professionals knew.

Read Beyond the Whirlwind of Diagnosis: What Parents Wish You Knew in the October 2026 issue of mivision:

Every expectant parent dreams of the future for their child. First steps. First words. First day at school. Artwork on the fridge. Driving lessons. Indepen

01/10/2026

This week we had the very special experience of launching Usher Syndrome: About Us, by Us at the University of Sydney, as part of Disability Inclusion Month.

Co-written by Annmaree Watharow, Emma Boswell and our CEO Emily Shepard, the idea for the book began with a simple question: how can a book about Usher syndrome be definitive if the people with lived experience aren’t the ones writing it? The result is a book written by people with Usher syndrome and parents, people who are both lived-experience and subject-matter experts.

For Emily, writing the book was more emotional than she expected. Sharing her family's story meant revisiting the period surrounding her son's diagnosis and the fear, uncertainty and isolation that came with it. One of the sections she is most proud of is her conversation with co-author Emma Boswell's mum, exploring what has changed for families over the decades – and, importantly, what hasn't.

As Emily shared at the launch, parents across countries and generations can still instantly connect over “that day” , the day their child was diagnosed, and the questions that follow about independence, opportunities, careers and quality of life. Helping families navigate those fears is a big part of why UsherKids Australia exists.

The launch itself was a wonderful celebration of the Usher community, featuring a book review from Eliza McEwin, a panel of people with lived experience of Usher syndrome, including Louis and Bea, with plenty of conversation and connection.

You can purchase a copy of the book here:
https://usherkidsaustralia.com/product/usher-syndrome-about-us-by-us/

01/10/2026

Our latest newsletter is out! 💙

It’s been a busy few weeks at UsherKids Australia, with our community’s voices being heard in lots of different places.

In this edition, we’re sharing highlights from the launch of Usher Syndrome: About Us, by Us, our work educating future health professionals, NDIS advocacy and deafblind community events, research collaborations, and some great opportunities coming up for our community.

There’s plenty happening and plenty to look forward to!

📖 Read the latest newsletter:
https://mailchi.mp/56cc09af8f15/ushthiscamp2023-10347074?e=[UNIQID]

📬 Want UsherKids news delivered straight to your inbox?
Subscribe here:
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28/09/2026

We’re heading to Sydney TOMORROW for a special celebration of the Usher community , and everyone is welcome.

Usher Syndrome: About Us, by Us
When: 4pm–6pm, Tuesday 29 September 2026
Where: Room 308, Susan Wakil Health Building, University of Sydney

Come and learn more about Usher syndrome through the people who live it.
Held as a celebration of Usher Syndrome Awareness Day and as part of Disability and Inclusion Month at the University of Sydney, the event will bring together members of the Usher community to share their experiences of hearing and vision loss, answer questions and showcase the diversity of life with Usher syndrome. We will also officially celebrate the Australian launch of Usher Syndrome: About Us, by Us, a book written with and by people with Usher syndrome for university students and professionals working across health and social care.

And because no Usher event needs to be too serious, there will also be a special comedy performance from deafblind drag queen Dizzy Bility! Afternoon tea will be provided, and copies of the book will be available to purchase and have signed on the day.
The event is organised by Annmaree Watharow and Emily Shepard and hosted by the Centre for Disability Research and Policy (CDRP), with grateful thanks to Virginie Lecomte Maloney.

For more information and to register, visit: https://www.eventbrite.com.au/e/usher-syndrome-about-us-with-us-tickets-1998843411451?aff=oddtdtcreator

About our event artwork
Our event artwork is a painting by Simon Watharow, an artist who lives with Usher syndrome, as does his sister Annmaree Watharow. The work depicts an Australian landscape beneath an orange sunset sky, with two birds — one soaring in the distance and another perched in a tree.

Hard copies can be ordered online through UsherKids:

https://usherkidsaustralia.com/product/usher-syndrome-about-us-by-us/

The eBook is also available here:

https://livedplacespublishing.com/book/isbn/9781917566124

21/09/2026

CALLING ALL MENTORS – USHER YOUTH CAMP 2027!

We're heading back to Magnetic Island, 5–11 July 2027, and we want YOU on our mentor team!

Usher Kids Australia's Youth Camp brings together young people with Usher syndrome for a week of connection, adventure, and confidence-building - and our mentors are at the heart of what makes it work. As a mentor, you'll support and guide our campers, share your own experience and perspective, and help create a week they'll remember for life.

**What we're looking for:**
Mentors aged 18-28 with Usher syndrome who are warm, patient, and genuinely excited to be part of a young person's journey.

**Good to know:**
Mentors are responsible for their own travel to Magnetic Island. In return, you'll gain an unforgettable experience, connect with an incredible international community, and be part of something bigger than yourself.

**Tell us: why do you want to be a mentor at Usher Youth Camp?**
We want to hear your story - what draws you to this role, and what do you hope to bring to our campers.

Expressions of Interest are now open - https://usherkidsaustralia.com/usherkids-australia-youth-camp-2026-mentor-expression-of-interest/

19/09/2026

USHER SYNDROME AWARENESS DAY

Today is Usher Syndrome Awareness Day. 💙🧡

For the past three weeks we've shared facts about Usher syndrome, about hearing, vision, balance, genetics and research.

But Usher syndrome is more than a collection of clinical facts.

Behind every diagnosis is a person.

Kids growing up. Teens finding their independence. Young people building their futures. Parents learning alongside their children. Families connecting with families. Researchers asking new questions. And a global community working towards a future with better treatments, better support and greater understanding.

This Usher Syndrome Awareness Day, we're celebrating the whole person, not just the diagnosis.

Because Usher syndrome may be part of someone's story, but it isn't the whole story.

Support for today. Hope for tomorrow.

16/09/2026

What we do

Support. Connection. Knowledge.

Three simple words that guide everything we do.

We connect families with people who understand. We provide information when families need it. We bring children and young people together so that growing up with Usher syndrome doesn't have to mean growing up without knowing someone else like you.

And we work alongside researchers, clinicians and our community to help create a better future for people with Usher syndrome.

Three days until .

13/09/2026

Why UsherKids exists

A diagnosis of Usher syndrome changes what families need, but it doesn't change what we want for our children.

We want them to have friends. Opportunities. Independence. Adventure. A sense of belonging. And the confidence to build lives that are meaningful to them.

That's why UsherKids Australia exists.

Our purpose is simple: to see children and young people with Usher syndrome and their families love their lives.