Alström Syndrome Australia Launch

Please join us as we officially launch Alström Syndrome Australia.

Alström syndrome is an ultra-rare, progressive genetic condition that can affect multiple body systems, including the heart, vision, hearing, liver, kidneys and metabolism. For people living with Alström and their families, it can mean navigating serious and changing health challenges, progressive vision and hearing loss, and uncertainty about the future.

Alström Syndrome Australia exists to create hope. We connect families, raise awareness, advocate for equitable care and strengthen collaboration between clinicians and researchers. Our goal is better care and a clearer path towards future treatments.

Join families, clinicians, researchers and supporters for drinks and canapés as we share the story behind the charity, our emerging research collaborations and our hopes for what comes next.

The evening will also offer a first glimpse of All the Ways I See, a new sensory arts experience produced by Worlds Within Creative and being developed with Deafblind children at its centre.

Children and families are warmly welcome. Please book a launch ticket for each person attending.

ALL THE WAYS I SEE

Before the launch, families can join us to explore the beginnings of All the Ways I See, a new sensory arts experience being developed for children aged 3 – 8, with Deafblind children at its centre.

Through texture, sound, movement and making, this playful workshop explores the many ways we experience and know summer beyond what we can see. Children’s choices, responses and creations will help shape the work as it develops.

Produced by Worlds Within Creative and led by Alyssa Kielty, the work brings together textile and tactile artist Shan Michaels, production designer Josh McIntosh and Deafblind printmaker and sculptor Joe Monteleone. Art for Earthlings is developing the physical theatre and performance, while Dotted Beats contributes expertise in communication through touch, play, vibration and body signing.

The work is being developed in association with Narbethong State Special School, shaped by the children and educators, with advice from specialist speech pathologist and Deafblind consultant Stephen Rose.

Children of all abilities are welcome. Places are limited and bookings are essential.

Please book one workshop ticket per participating child and accompanying parent or carer.

All the Ways I See is published by Allen & Unwin on 13 October.

Planning to attend both?

All the Ways I See: Sensory art in the making and the Alström Syndrome Australia Launch can be booked together. Simply select tickets for each session before proceeding to checkout.