UsherKids Australia

UsherKids Australia Our Purpose
To see children and families living with Usher syndrome love their lives.

Our Mission
To empower the Usher Community through support, connection and knowledge. https://www.instagram.com/usherkidsaustralia/
https://twitter.com/usherkids
http://www.usherkidsaustralia.com
[email protected]

A new literature review from Deafblind Scotland has brought together more than 40 studies exploring the psychosocial imp...
10/06/2026

A new literature review from Deafblind Scotland has brought together more than 40 studies exploring the psychosocial impact of Usher syndrome across the lifespan.

The findings are clear:

• Emotional wellbeing matters just as much as hearing and vision outcomes
• Social connection and peer support are strongly linked to quality of life
• Families need coordinated support from diagnosis, not years later when vision loss becomes more apparent
• Many people with Usher syndrome face ongoing uncertainty about identity, independence, education, employment and the future
• Fragmented services continue to leave families navigating complex systems on their own

Importantly, the review highlights the growing evidence that psychosocial support, peer connection, multidisciplinary care and early intervention are not "nice extras" - they are essential components of living well with Usher syndrome.

We are proud to see several Australian studies included in this international review, including research exploring parent support needs, paediatric Usher syndrome, and the need for multidisciplinary care.

For the UsherKids community, this reinforces what families have been telling us for years: support for today is just as important as hope for tomorrow.

📖 Read the full review here: http://usherkidsaustralia.com/wp-content/uploads/2026/06/Usher-Syndrome-DbS-Lit-Review-v.-June-26.pdf

This is our why.These photos represent our community of children and young people with Usher syndrome - a genetic condit...
09/06/2026

This is our why.

These photos represent our community of children and young people with Usher syndrome - a genetic condition causing hearing loss and progressive vision loss.

What you see here is exactly why we run.

For connection.
For belonging.
For confidence.
For a future filled with possibility.

With six weeks until Run Melbourne, we'd love you to join Team UsherKids and help us support children, young people and families across Australia.

If you've been thinking about signing up, now is the time. Let us help you find your why.

🏃 Join the team
💙 Donate
📣 Share our story

https://runmelbourne26.grassrootz.com/usherkids-australia

Together, we can make a difference. 💙

436 sausages.436 happy tummies.436 reasons to smile.A huge thank you to Port Melbourne Football Club for hosting yesterd...
01/06/2026

436 sausages.
436 happy tummies.
436 reasons to smile.

A huge thank you to Port Melbourne Football Club for hosting yesterday’s BBQ fundraiser for UsherKids Australia.

With a double header at home, and both Port Melbourne teams winning in thrilling style, it was the perfect day to bring people together, raise awareness, and show what community support can look like in action.

Every sausage sold helps us support children and young people with Usher syndrome and their families to feel connected, understood and less alone.

Thank you to everyone who bought a sausage, stopped for a chat, volunteered, cheered, cooked, served and supported us.

UsherKids Australia Family Weekend - Highlights from Day 1We are feeling incredibly grateful for the many little moments...
23/05/2026

UsherKids Australia Family Weekend - Highlights from Day 1

We are feeling incredibly grateful for the many little moments that together make up such a tight-knit community.

The quiet conversations over coffee. Young people finding others who just “get it.” Parents sharing stories, worries and hope. Siblings stepping in to help. Clinicians, students and volunteers learning directly from lived experience.

These moments may seem small, but they are powerful, and they are often the moments families remember most.

What a weekend. 💛Over 80 people joined us for the UsherKids Australia Family Weekend - babies, children, teens, young ad...
18/05/2026

What a weekend. 💛

Over 80 people joined us for the UsherKids Australia Family Weekend - babies, children, teens, young adults, parents, grandparents, siblings, volunteers and staff - all coming together from far and wide to connect, learn, support and simply be understood.

We are still processing the incredible feedback and heartfelt conversations shared across the weekend:

“Yesterday was the first time I really had the opportunity to speak with other people with Usher syndrome.”

“I left the day feeling much more at ease as to what the future might hold for our kids.”

“It was an incredibly rewarding experience.”

“Experiences like this really remind me how special this community is.”

To every family, volunteer, presenter, supporter and young person who joined us - thank you. These weekends remind us why connection and community matter so deeply.

We have so many beautiful professional photos and videos still to come, but for now, we are taking a moment to rest, reflect and recoup after such a special few days.

More soon 💛

Now available!!!!!Usher Syndrome – About Us, By Us is a lived-experience resource on Usher Syndrome, covering its types,...
03/05/2026

Now available!!!!!

Usher Syndrome – About Us, By Us is a lived-experience resource on Usher Syndrome, covering its types, prevalence, and the realities of parenting, education, work, and aging, alongside communication and wellness strategies. Designed for students, professionals, policymakers, and families, it builds understanding of the needs and experiences of those living with the condition.

💛 Melbourne Family Day attendees can purchase a copy on the day and have it signed by co-author Emily Shepard

👉 A must-read for anyone wanting to better understand, support, and advocate alongside the Usher community.

Real experiences.
Real strategies.
Real understanding.

Available to purchase here: https://livedplacespublishing.com/book/isbn/9781917566124?srsltid=AfmBOoqHfrfh5k7XECTlI9ifPoyPNWensTlx_vqThs7QxlyyPWD0q8yk

Today, on World Alström Day, we stand alongside families navigating rare, complex conditions that, like Usher syndrome, ...
03/05/2026

Today, on World Alström Day, we stand alongside families navigating rare, complex conditions that, like Usher syndrome, don’t fit neatly into one system, one service, or one pathway.

Liam’s story is a powerful reminder that conditions such as Alström syndrome and Usher syndrome share more than clinical features. They share experiences-long diagnostic journeys, fragmented care, and families who become the coordinators, advocates, and often the drivers of change.

At UsherKids Australia, we recognise that multisensory conditions, whether they involve hearing, vision, or broader systemic impacts, require integrated, family-centred approaches. No family should have to navigate this alone, and no organisation should have to build solutions in isolation.

That’s why we deeply value and support the work of emerging, parent-led organisations like Alstrom Syndrome Australia. These communities are built from lived experience, and they are essential in:
• Raising awareness of ultra-rare conditions
• Connecting families to each other and to global knowledge
• Driving research, advocacy, and better models of care
• Ensuring that no child or family remains invisible

Real change happens when we work together across conditions, sharing knowledge, amplifying voices, and pushing for systems that recognise the complexity of multisensory and rare diseases.

Because while these conditions may be rare, the need for connection, understanding, and coordinated care is not.

Some sneaky chips at Heatherton to support a wonderful cause
22/04/2026

Some sneaky chips at Heatherton to support a wonderful cause

Run Melbourne for UsherKids Australia If you’ve been thinking about signing up for Run Melbourne, now is the time to com...
21/04/2026

Run Melbourne for UsherKids Australia

If you’ve been thinking about signing up for Run Melbourne, now is the time to commit.

At UsherKids Australia, our mission is simple:

Supporting our Usher community today. Advancing hope for tomorrow.

Children and young people with Usher syndrome are navigating school, friendships, identity, independence, and the realities of combined hearing and vision loss every day. They should not have to navigate that journey alone. Through youth camps, mentoring, family programs and peer connection, UsherKids is building a community where young people with Usher syndrome can find belonging, confidence and connection with others who truly understand their world.

💙 All proceeds raised through Team UsherKids at Run Melbourne will go directly towards our next UsherKids Youth Camp in July 2027.

Run. Walk. Fundraise.

Join Team UsherKids and make every kilometre count.

🔗 Register for Run Melbourne and choose UsherKids Australia as your charity.
https://runmelbourne26.grassrootz.com/usherkids-australia

We had a fabulous day yesterday celebrating our collaboration with the . Many thanks to those that joined us to hear sn...
05/12/2025

We had a fabulous day yesterday celebrating our collaboration with the . Many thanks to those that joined us to hear snapshots of the various research projects we have undertaken over the past few years and how these translate into better outcomes for our community.

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