Join the Movement: Fundraising for Williams Syndrome Awareness

When our daughter Viviana was diagnosed with Williams Syndrome, our world changed overnight. Not because she changed — she had always been Viviana — but because suddenly everything made sense.

The health concerns, the developmental struggles, the behaviours, the appointments, the feeling that something bigger was going on that nobody seemed to fully connect together.

Before her diagnosis, we had never even heard of Williams Syndrome.

And honestly, most people still haven’t.

That’s one of the hardest parts of rare diseases. You’re trying to navigate something incredibly complex whilst also explaining it constantly to the people around you. Teachers. Friends. Family. Health professionals. Complete strangers.

That’s a huge part of why we started Run for Williams Syndrome Australia.

Viviana (centre, front) before our first fundraising event with her uncle, Andrew (left), and fellow runners for the cause, Cam (middle), and Jesse (right).

You’re trying to navigate something incredibly complex whilst also explaining it constantly to the people around you.

That’s a huge part of why we started Run for Williams Syndrome Australia.

Initially, it was simply about doing something. Anything. Our local council hosts a family-friendly sunrun each year where charities can be involved for fundraising, and with the support of Williams Syndrome Australia, we decided to sign up and raise awareness.

I thought, even if I was the only one talking about it and no one donated or joined, that's okay, I'm fine with that. I knew my voice, participation and donation was better than none.

At first, it felt terrifying sharing our story publicly. You’re opening up some of the hardest, most vulnerable parts of your life for people to see. The grief. The fear. The hospital visits. The unknowns. But also the beauty in it all too.

And what surprised us most was how many people genuinely wanted to learn.

People started asking questions about Williams Syndrome, shared our posts, started donating, talking about and sharing the event, arranging t-shirts even. People wanted to participate for Viviana. That means more than I could ever explain.

Fundraising for rare diseases isn’t just about raising money. Of course funding is important — organisations need support to continue helping families, advocating and providing resources — but awareness itself is powerful.

Awareness leads to understanding, which leads to inclusion, and that inclusion is what changes lives.

For families like ours, inclusion can mean a teacher understanding behaviours instead of punishing them. It can mean earlier diagnosis for another child. It can mean less isolation for parents who feel like nobody understands what they’re carrying.

When you’re raising a child with additional needs, life can feel heavy sometimes. There are appointments, therapies, surgeries, advocacy meetings and moments where you genuinely wonder if people understand how hard your child is trying just to navigate everyday life.

But there is also so much joy.

People with Williams Syndrome have this incredible way of bringing light into the lives of the people around them. Viviana is hilarious, deeply empathetic, wildly social, stubborn, cheeky and completely herself in every possible way. She brings life to every room she walks into, and honestly, that’s why we keep doing this.

Our daughter deserves a world that understands her better, that sees her value, her personality, her capabilities and her heart.

You don’t need to host huge fundraisers or run marathons to join the movement. Sometimes supporting awareness is as simple as sharing a post, donating when you can, attending an event or taking the time to learn about Williams Syndrome.

Those small actions matter more than most people probably realise.

To everyone who has supported Run for Williams Syndrome Australia so far — thank you. Thank you for listening to our story, supporting our family and helping create more awareness for a syndrome that deserves to be seen and understood.