Valentina's Village

It Takes a Village
to Raise a Child.
Now it’s Going to Take a Village to Save One.

Valentina is two years old and the only person in Australia living with Hyaline Fibromatosis Syndrome. There is no cure. We’re raising the money to fund one.

Meet Valentina

Donate

Tickets sold
out in 10 hours

Raised toward a
genetic treatment program

1 of 1

The only reported case in Australia

Treatments currently exist

Tickets sold
out in 10 hours

Raised toward a
genetic treatment program

1 of 1

The only reported case in Australia

Treatments currently exist

Purple Ribbon Sponsors

Meet Valentina

She’s two years old. She’s happy, she’s full of life, she’s smart, she’s cheeky, and she’s her parents’ first and only born.

She’s also the only person in Australia living with her condition. Together, we’re going to help find her a cure.

Read Valentina’s story

There is no cure. All we can do is manage it.

There is no cure.
All we can do is manage it.

We can’t accept that. And we won’t.

Donate

What Valentina is Living With

Valentina's body overproduces a clear, protein-like material called hyaline.
It builds up under her skin, around her joints, on her gums, and it can also grow on internal organs.

Fewer than a hundred cases have ever been described in medical
literature. That’s precisely why no treatment exists. Children like Valentina fall through every gap, as producing a treatment for such a small sample size of children is not commercially viable.

Valentina's body overproduces a clear, protein-like material called hyaline. It builds up under her skin, around her joints, on her gums, and it can also grow on internal organs.

Fewer than a hundred cases have ever been described in medical literature. That’s
precisely why no treatment exists. Children like Valentina fall through every gap, as producing a treatment for such a small sample size of children is not commercially viable.

Learn about the condition

We don’t want to take on a project that’s likely to fail. We want to give it the best chance of success.

We don't want to take a project to fail. We want to be in the best chance.

Why This Can Work Now

The exact cause is known. Researchers pinpointed the two faults in Valentina’s ANTXR2 gene, and a biopsy confirmed the diagnosis in her tissue.

The science is tractable. Because her condition comes down to a single gene, there is a clear strategy for treating it. Her own tissue is banked. Samples are already stored, ready to begin the laboratory work. A rare head start for a condition this rare.

Valentina's condition comes down to a single genetic fault, there is a planned strategy to treat it, and a world-class team is ready to begin the laboratory work.

Read Our Plan

1,300 Seats. Sold Out in 2 Days.

Our inaugural gala dinner sold out in a 10 hours. We moved to a bigger venue, released another 550 seats, and those went too. 1,300 people, all choosing to stand with Valentina.

SEE THE NIGHT

Join the Village

In Italy, the village is everything. It’s where everybody knows you, everybody feeds you, and nobody faces anything alone.

That’s exactly what we’ve experienced.
Our family, our friends and our community have wrapped around us.

Leave your email and we’ll keep you
with us for the whole journey.

Join the village

Together, a village can change everything.

We’re Asking You to Stand With Us.

Valentina deserves the chance to grow up, to go to school, to live the life every
two-year-old should get to live.

Valentina’s Story Our Mission Gala Dinner

Life in the village

Valentina's Village Ltd is a registered charity with the Australian Charities and Not-for-profits Commission (ACNC).
ABN 95 700 589 064

Tax status: Valentina’s Village Ltd has applied for Deductible Gift Recipient (DGR) status. Donations are not currently tax deductible. If DGR is granted we will contact everyone who has given about receipts.