Start a charity, they said. It'll be fun... 16 years later
When FAST Australia was founded in 2010, our vision was simple: help find a cure for Angelman syndrome. At the time, that felt both exhilarating and like an almost impossible dream, a castle-in-the-air kind of thing.Professor Ed Weeber had only recently shown that it was possible to reverse many features of Angelman syndrome in a mouse. For families who had only ever heard, “there are no treatments,” that research changed everything. For the first time, there was genuine hope that if we understood the condition well enough, we might one day treat it.That hope brought a small group of Australian families together to create FAST Australia. Of that founding group, our kids are now adults.We share a vision with FAST in the United States, but FAST Australia has always charted its own course. We were established as an independent Australian charity because we believed Australia had its own role to play: delivering for Australian families, contributing to the Australian Angelman community alongside the Angelman Syndrome Association of Australia (ASAA), and contributing to global research.
*pictured right: original board members Jo Davis & Jen Kyriacou at the FAST Launch in Brisbane Sept 2010
That independence has allowed us to invest where we believed we could make the biggest difference: research, clinical trials, the Global Angelman Syndrome Registry, asNavigators, education and advocacy.Looking back, I realise how much I misunderstood what our job would become. I thought our purpose was to help find a cure. Sixteen years later, I’ve realised that finding a cure is only part of the story.Families don’t only need hope for tomorrow. They need support today: earlier diagnosis, trusted information, clinicians who understand Angelman syndrome, opportunities to participate in research, better standards of care, stronger advocacy and systems that work. FAST Australia and ASAA each contribute their strengths to that shared goal, making us a strong Australian community.We realised our role wasn’t simply to fund research. It was to help build the pieces that move research, care and support forward together. Better research informs better care. Better care encourages participation in research. Registries strengthen both. Advocacy removes barriers. Together, they move us towards the same goal.
I have also come to appreciate that rare diseases do not exist in silos, and neither should the organisations working to solve them.
Some of our best ideas have come from conversations across the rare disease
community, and I hope some of ours have helped others in return. Every time a
patient organisation shares what works, the entire rare disease community moves
forward.What has been achieved is a credit to the people who quietly
say yes: past and present board members who have given countless volunteer
hours, researchers and clinicians who have stuck by us, families who have
shared their stories and data, and fundraisers who are often already carrying
the demands of Angelman syndrome in their own homes. Every one of those
contributions has mattered.Not everyone who helped build this community is still here
to see how far we have come. Over the years, we have lost children, young
people and adults whose lives shaped this organisation. Some never had the
opportunity to see the scientific progress we are witnessing today.There have been moments over those sixteen years when
progress felt painfully slow, and moments when science seemed to leap forward
overnight. Through both, one thing has remained constant: families kept believing.
*Pictured right: Elvan Bektas, Meagan Cross, Sally Asfour, Maria Zampogna, Sophie Seema & Chloe Taulahi at Maria's Inspired by an Angel fundraiser in 2022
This past month has been a painful reminder that progress is rarely a straight line. The Phase 3 trial of GTX-102 did not meet its primary or key secondary endpoints. For a community that has invested so much hope in therapies targeting the underlying biology of Angelman syndrome, that result was deeply disappointing. But a trial that doesn't deliver the result we hoped for still has something important to teach us. Understanding what happened, what the data can tell us and how we design and measure future trials will be part of the work ahead.For me, that is personal too. My own daughter is now an adult. Like so many parents, I have watched birthdays come and go while
wondering whether the breakthrough we hoped for would arrive in time to change her life. Sixteen years can feel like a lifetime when you are raising a child with a complex disease. And yet, in 2026, we are living through an extraordinary time in rare disease. Science is advancing at a pace I don’t think anyone could
have imagined when FAST Australia began. Artificial intelligence has the potential to find patterns in data we couldn’t previously see. Gene therapies and gene editing are no longer distant possibilities. Every year we understand more about Angelman syndrome, and every discovery creates another opportunity to improve lives.When FAST Australia began, therapies targeting the underlying cause of Angelman syndrome felt like something we hoped might happen one day. Today, those therapies have moved from the laboratory into clinical trials. Around the world, other rare genetic conditions are already being transformed through gene therapies and gene editing technologies. Diseases once thought untreatable are now being treated and, in some cases, children are effectively being cured. There is still enormous work to do before every person with Angelman syndrome can benefit from safe, effective and accessible treatments. But the conversation has changed. We now know enough to be testing therapies that target the underlying biology of Angelman syndrome in people. We don't yet know which approaches will ultimately deliver meaningful benefit, or what we willlearn along the way. Our job is to keep helping move that work forward.
*Pictured left: FAST Chairperson Shane Jez advocating at GP conferences around the country
Perhaps the greatest lesson of these sixteen years is that progress is built over years by people who keep showing up, through collaborations, friendships and a shared belief in what might be possible, even when the finish line still feels a long way away.When I look at FAST Australia today, I am proud of what our community has built together. We fund nurses because care matters, build registries because data matters, advocate because systems matter and invest in research and clinical trial infrastructure because Australian families deserve access to opportunities here at home.Sixteen years ago, we started with a dream of one daytreating Angelman syndrome. The mission has grown, but the dream has not changed.And I honestly believe the most exciting chapters are still to be written, together, by our community.Written by Meagan Cross | FAST Co-founder and CEO, but most importantly, Molly's mum
FAST Australia is an independent Australian Health Promotion Charity and a separate legal entity from FAST United States (cureangelman.org).Each organisation operates under its own governance and legal obligations.
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