Beyond the Smile began with curiosity, conversations, and a lot of listening.As part of the University of Technology Sydney (UTS) shopfront program, students met with Angelman syndrome families in Sydney, interviewed parents, and spent time getting to know individuals with Angelman syndrome. Again and again, they noticed the same thing - people often stop at the smile.But beyond that smile are personalities, preferences, challenges, humour, opinions, and whole lives that rarely get seen.This campaign grew from those moments. Beyond the Smile is an invitation to pause, look a little closer, and see the whole person — not just what’s visible at first glance.
Help spread the message
Individuals living with Angelman syndrome are more than a smile or a diagnosis. Help us challenge assumptions and raise awareness by sharing the Beyond the Smile campaign.
Hear their stories...
Sam, Rose & Cheng
My name is Cheng (38), mum to Rose (almost 4) who lives with Angelman Syndrome. Sam (39) is Rose’s dad. Rosie was diagnosed on 25th January 2023, The last two and half years were initially very difficult, but slowly got easier in most aspects but we also faced new challenges. Our diagnosis journey was quite straight forward. The most difficult part for me was to receive the diagnosis and see the medical prognosis on the internet. It felt like I was throwing to the deepest end where there was no light and no bottom to catch me.
Lourdes, Jerome & Dimity
My name is Lourdes Matthews (38), mother to Jerome Morris (14) and Dimity (64) is his Grandmother.Jerome was diagnosed with Angelman syndrome at 15 months through his geneticist, both Jerome’s father Jeremy and I were also tested and found out that neither of us were carriers.
Tomasi & Chloe
Hello my name is Chloe Taulahi, I am the mum of Tomasi Taulahi (13) with a type of Angelman sydrome caused by Uniparental Disomny, and his siblings Meleana (20) and Sione (16).
Tomasi is my third child and we knew something just wasn’t right but we carried on with life and thought he was just a late achiever.