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The mission of the Foundation for Angelman Syndrome Therapeutics Australia is to improve the quality of life for individuals with Angelman syndrome through timely diagnosis, access to best practices in care & treatments, and advancing research for a cure.

30/08/2026

⛳💙
For Angelman Syndrome

Join us for an incredible day on the green while making a real difference.

📅 Friday 20th November 2026
📍 The Heritage Golf & Country Club, VIC

This event brings together the community, golfers, and supporters to raise awareness and vital funds for Angelman Syndrome. Whether you're playing, sponsoring, or simply supporting, every contribution counts.

Let’s swing with purpose and create change together.

👉 For more information head to the link below:
https://swingforacure-fast.raiselysite.com/

📩 [email protected]

27/08/2026

What do you really want to know about Angelman research or clinical trials? 🔬

We're starting to plan the next round of FAST Australia's Science in the Pub events later this year, and we'd love our community to help shape the conversations.

Maybe it's about the current trials. How ASOs work. What we're learning. What happens next. Age, genotype, endpoints, placebo, biomarkers, or something you've heard that you simply don't understand.

If you could have ONE question answered about Angelman research or clinical trials, what would it be?

Nothing is too basic, too complicated or too left field. Drop it below. 👇

We'll use your questions to help shape the conversations when Science in the Pub returns. 🍻🔬

21/08/2026

One year ago today. 💜

This was the start of Huxley's Heroes , an incredible campaign created in honour of Huxley, who also happens to be celebrating his 2nd birthday today! 🎂💜

What Mitch, Huxley's mums Maguire and , their family, friends and an extraordinary community created became the biggest awareness and fundraising campaign for Angelman syndrome we've seen in Australia.

Watching this again still gives us goosebumps.

People ran, donated, shared, volunteered, sponsored, cheered and, importantly, talked about Angelman syndrome. Thousands of people learnt about a rare condition they may never otherwise have heard of, while an incredible amount was raised to support FAST Australia's mission.

For a rare disease, that kind of visibility matters.

One year on, we're still incredibly grateful to everyone who got behind Huxley's Heroes and made it what it was.

And today, an extra special Happy 2nd Birthday to Huxley! 💜🎂

What a difference one little boy and the people who love him can make.

20/08/2026

We made a thing... 👀
Well, technically we designed a thing. It doesn't exist yet.
But when it does, you might want one.
And you might have to earn it. 😉
More soon...

16/08/2026

The worries change over time. Health. Sleep. Behaviour. NDIS. The future. Who will care for our children and adults when we can't. Whether treatments will come, and whether they'll be accessible when they do.

Sharing the hard things matters too.

If we're going to advocate for better care, better services, better policy and better treatments, we need people to understand the whole experience of living with Angelman syndrome, not only the parts that are easy to share.
What's a worry that sits quietly in the background for you?

You don't need to sugar coat it. That's what Beyond the Smile is for. 💚

13/08/2026

Last week FAST Australia was in Canberra for some important conversations about what comes after we find effective treatments.

Our CEO, Meagan Cross, attended the Patient Voice Initiative's Inaugural HTA Collaborative Day, bringing together more than 100 "knowledge holders" across the HTA landscape, including patient organisations, government, industry and others working across health policy and access.

HTA, or Health Technology Assessment, sounds complicated, but for our community the question at the heart of it is pretty simple: if a new treatment works, how do we make sure Australians can actually access it?

We also met with the Health Minister's office to talk specifically about Angelman syndrome, where the science is heading and why we need to be thinking about access well before a treatment reaches the finish line.

For us, preparing for therapies isn't only about attracting clinical trials to Australia. It's about building the data and evidence we will need, ensuring the patient and family experience is understood, and being part of the conversations that will ultimately influence access.

Waiting until a treatment is approved to start thinking about access is too late.
We'll demystify HTA more soon & we promise to keep the acronyms to a minimum. 😉

09/08/2026

City2Surf smashed! 🏃‍♀️ Huge props to Sarah, Mickey, Clancy, the BAM squad, Ted, Boris, Anna, Leo & Mia for putting in the hard yards and getting Angelman syndrome on multiple news outlets! 📰 Catch the recap on ABC News tonight at 7pm. And don't think we're done yet! Share the donation link and help us turn all this awareness into some serious cash for our Angelman fam 💸. https://tinyurl.com/bamfast

08/08/2026

Our incredible City2Surf crew will be taking on 14 km tomorrow, complete with angel wings, wheelchairs & prams and some very determined legs, to raise funds for FAST Australia.

If you're in Sydney, we'd LOVE to see some Angelman support along the course. Grab some cardboard, make a sign, find a spot and give Mickey, Ted & the Bathurst Academy of Music (BAM) crew, Boris, Anna, Leo & Mia the loudest cheer you can! 📣

Not in Sydney or can't make it? You can still be part of their team by donating to support their incredible effort. Every dollar raised helps FAST Australia continue our work in research, care, data, advocacy and preparing Australia for new treatments.

🪽 Sydney: make a sign and make some noise.
💙 Everyone else: donate and cheer from wherever you are. https://tinyurl.com/bamfast

And if you spot a group of people running City2Surf in angel wings... you'll know exactly who they are. 😂

05/08/2026

Last week we joined patient organisations, clinicians, industry and government to discuss one important question: How do we make sure Australians living with a rare disease can access new treatments?

This is why we invest in our Registry, work to improve models of care, advocate for better evidence, and ensure the Angelman community has a voice in decisions.

Across the rare disease community, our collective voice is growing louder, and that's exactly what's needed to create meaningful change. A successful clinical trial isn't the finish line; the finish line is families being able to access the treatments.

The future of Angelman syndrome won't be shaped by science alone. It will also be shaped by the policies, evidence and partnerships that determine whether new therapies reach the people who need them.

That's why we continue to show up. Together.

02/08/2026

Next Sunday, the Bathurst Academy of Music (BAM) community will step up to support owner and founder Mickey Pye as he takes on Sydney's City2Surf with his nephew, Ted.

Throughout the gruelling 14 km course, the BAM team will take turns pushing Ted, all while wearing angel wings 🪽 to raise funds for FAST Australia.

They'll also be joined by fellow little angel Leo, aged 2, along with his parents, Anna and Boris, and five-month-old sister Mia. Less than a year after Leo's Angelman syndrome diagnosis, this will be Anna and Boris's first City2Surf. Together, they'll tackle Heartbreak Hill with Leo in his pram, decked out in angel wings and blue streamers.

If you'd like to support Mickey, Ted, Leo and the incredible BAM team, we'd be so grateful. Every donation helps FAST Australia continue supporting families today while preparing for the therapies of tomorrow.

💙 Donate here: https://tinyurl.com/bamfast

Good luck, Team BAM! We'll all be cheering you on from around Australia. 💙🪽

Address

Quondong Cl
Cairns, QLD
4870

Telephone

+611300078108

Website

http://cureangelman.org.au/

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