UsherKids Australia

19/07/2026

So much fun, so much effort, and so much love towards getting our young people with Usher syndrome to camp next year. Thanks to everyone for joining us, helping spread awareness and raising funds for UsherKids Australia. There still time to donate https://runmelbourne26.grassrootz.com/usherkids-australia 💙🧡💛

17/07/2026

Ten years ago, UsherKids Australia was founded by two mums who simply wanted a better future for children growing up with Usher syndrome. Today, we're honoured to share the video created with the University of Melbourne as part of our nomination for the Research Australia Awards.

What makes this recognition so special isn't just the research; it's how the research happens. Together with our research and clinical partners, we've spent the past decade demonstrating the value of lived experience in shaping research, improving services and creating opportunities for families affected by Usher syndrome. Every step has been built through collaboration between community, clinicians and researchers. For a condition as rare as Usher syndrome, research only creates impact when it's grounded in the voices of the people it exists to serve.

08/07/2026

🚨 Last chance to join Team UsherKids! 🚨

Just 10 days to go until Run Melbourne, and we have 4 sponsored places still available.

This isn't just a run.

It's a chance to help children and young people with Usher syndrome,a rare genetic condition causing hearing loss and progressive vision loss, find connection, confidence and a community that truly understands.

Every kilometre run helps create opportunities for families to connect, young people to build lifelong friendships, and children to grow up knowing they're not alone.

Whether you're chasing a personal best, walking with friends, or simply looking for a reason to get moving, we'd love to have you on our team.

💙 We cover your race registration.
🏃 You commit to raising funds for UsherKids Australia.
🙌 Together, we'll make every step count.

Only 4 sponsored places remain, so if you've been thinking about joining us, now is the time.

👉 Register today: https://runmelbourne26.grassrootz.com/usherkids-australia

Can't run? You can still be part of Team UsherKids by donating or sharing this post. Every act of support helps create a future filled with hope and possibility

29/06/2026

We are filming today for our Research Australia video in the lead up to the awards in August. UsherKids Australia is a finalist in the Advocacy & Philanthropy category for our collaboration with The University of Melbourne and we can’t wait to celebrate with our research team in Sydney.

22/06/2026

What does the UsherKids community mean to the families who are part of it?

This video shares the answer in their own words.

Filmed during our recent UsherKids Family Weekend in Melbourne, it captures the voices of parents, young people, siblings and grandparents reflecting on the power of connection, understanding and belonging.

For many families, meeting others who truly understand life with Usher syndrome is life-changing. Friendships are formed, experiences are shared, and the future feels a little less uncertain.

As one parent shared:

"It's not even possible to pick a favourite moment. As soon as we arrived and started seeing all the familiar faces it was instantly like 'this is home, this is exactly where I'm meant to be'"

From first diagnoses to adulthood, no family should have to navigate Usher syndrome alone.

Thank you to every family who travelled from across Australia to be part of this special weekend, and to everyone who shared their stories so openly.

Together, we are building a community where children, young people and families with Usher syndrome are supported today and filled with hope for tomorrow.

This is "UsherKids Australia Family Weekend May 2026" by UsherKids Australia on Vimeo, the home for high quality videos and the people who love them.

21/06/2026

Eleven years ago, these photos were taken. A few weeks later, Dave ran a marathon for Usher Syndrome Awareness Day.

At the time, Louis was just a little boy and his parents were still learning what Usher syndrome would mean for his future and for their family. There were many questions, very few answers, and UsherKids Australia was just a dream.

This week, while training for Run Melbourne, Dave found himself wondering why he was doing it all over again. The answer was easy.

Because UsherKids Australia makes people's lives better.

When Louis was first diagnosed, support was hard to find. They didn't know any other families living with Usher syndrome. They didn't know what the future would look like. They just hoped everything would somehow be OK. Today, Dave sees the difference that connection makes.

He sees families supporting each other through the toughest moments. He sees parents sharing knowledge and hope. Most importantly, he sees the friendships Louis has built with other young people who truly understand what life with Usher syndrome is like.

Many of those friendships were strengthened at the first UsherKids Youth Camp last year. It was a powerful and emotional experience that created connections that will last a lifetime. The funds raised through Run Melbourne will help make the next camp possible.

When Dave looks at these photos, eleven years apart, he can't help but wonder:

What would he tell that little version of Louis?

That one day he'll meet people just like him. That he won't have to navigate this alone. That some of his closest friendships are still waiting for him.

And what would he tell that younger version of himself?

That there will be hard days ahead, but there will also be hope, friendship and community. That one day families like theirs will have the support they wished they'd had.

Eleven years later. The same son. The same dad. The same hope.

If you'd like to support Dave's Run Melbourne half marathon for Team UsherKids, we'd be incredibly grateful. ❤️

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

18/06/2026

RUN MELBOURNE

1 Month to Go: Frankie’s Why

When people think about Usher syndrome, they often think about the child or young person living with the condition.

But Usher syndrome impacts whole families.

This year, Frankie is running with Team UsherKids for the siblings.

The brothers and sisters who grow up alongside disability and rare disease. The ones who learn empathy, patience and inclusion from an early age. The ones who quietly step up, lend a hand, and help create the sense of belonging that makes our community so special.

At our recent UsherKids Family Weekend, Frankie spent her time with the younger children, playing games, helping everyone feel included and making sure no child was left out.

For many siblings, Usher syndrome becomes part of their story too. They share the challenges, celebrate the milestones and often become lifelong supporters of their brother or sister.

As we count down to Run Melbourne, we’re sharing the stories behind why our team is running.

Frankie is running for the siblings.

The quiet achievers.
The cheerleaders.
The helpers.
The ones who grow up understanding that community matters.

This is her why.

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

If you’d like to support Frankie and the rest of Team UsherKids, every donation helps create connection, support and opportunities for children, young people and families living with Usher syndrome.

If you’d like to run, walk or cheer alongside Team UsherKids, we’d love to have you join us.

18/06/2026

Today, ahead of Deafblind Awareness Week, I had the privilege of standing on the steps of Parliament House alongside my son Louis, members of the deafblind community, families, advocates and sector partners to raise awareness of deafblindness and the need for meaningful change.

Too many children and young people with deafblindness remain invisible within our education system. Hearing and vision impairments are often considered separately, meaning students may not be recognised as deafblind and can miss out on the specialised supports, communication access and educational adjustments they need to thrive.

Today was a reminder that advocacy matters, but so does community.

Wrapped in colourful handmade knits during the annual yarnbombing of Parliament House, we celebrated the strength, diversity and resilience of the deafblind community while calling for:

• Improved identification and recognition of deafblindness in education settings
• Appropriate recognition within Disability Inclusion Profiles and support planning
• Greater investment in workforce capability and educator training
• Genuine partnership with people with lived experience and deafblind-led organisations

Every student deserves to be seen, understood and supported.

Thank you to Deafblind Victoria, Able Australia, Vision Australia, NextSense, CHARGE Syndrome Australia, Guide Dogs Victoria, Aurora School and the many families and advocates who continue to champion a more inclusive future.

16/06/2026

We are incredibly proud to share that UsherKids Australia has been named a finalist in the 2025–26 Research Australia Health and Medical Research Awards. Research Australia's awards recognise outstanding contributions to health and medical research across Australia and are among the nation's most prestigious research honours.

For our community, this recognition is about so much more than research.

Ten years ago, many of our families were navigating a diagnosis of Usher syndrome with little information, limited support and few opportunities to connect with others who truly understood the journey.

Today, because families chose to share their stories, researchers chose to listen, and our community chose to work together, we are building an evidence base that is changing what support looks like for children, young people and families living with Usher syndrome.

From understanding parent support needs following diagnosis, to exploring the experiences of adolescents and young adults living with Usher syndrome, this research has always been grounded in the voices of our community.

This recognition belongs to every child, young person, parent and adult with Usher syndrome who has trusted us with their story.

It belongs to our research partners at the University of Melbourne, led by Associate Professor Karyn Galvin and Professor Lauren Ayton, who understand that the most meaningful research starts by listening.

Most importantly, it demonstrates what is possible when lived experience and research come together with a shared goal: creating a future where children and young people with Usher syndrome can love their lives.

Thank you to everyone who has been part of this journey. We are only just getting started.