Alström Syndrome Australia Launch

Please join us as we officially launch Alström Syndrome Australia.

Alström syndrome is an ultra-rare, complex and progressive genetic condition that can affect almost every system of the body. For people living with Alström and their families, it can mean navigating serious and changing health challenges, progressive vision and hearing loss, and far too few answers about what comes next.

Alström Syndrome Australia exists to create hope.

Through connection and community, greater awareness, advocacy for equitable care, and collaboration that strengthens research, we’re working towards better lives and a better future for people living with Alström syndrome.

For our launch, we’re bringing together families, clinicians, researchers, rare disease and industry leaders, and supporters to share what we know, what’s changing and where we can find genuine hope for the future.

We’ll share how Alström Syndrome Australia (ASA) is working to strengthen research collaboration, build connections with leading clinical and scientific expertise in Australia and internationally, and help create a clearer path towards better care and future treatments. This reflects ASA’s broader commitment to connecting with researchers, clinicians, institutions and collaborators in Australia and internationally, and supporting research across the spectrum from discovery through to clinical translation.

The evening will also offer a first glimpse of a new sensory arts experience being developed with children and educators from Narbethong State Special School, alongside Australian artists, creatives and access specialists.

Join us for drinks and canapés, conversation and connection as we celebrate the beginning of Alström Syndrome Australia — and the community, partnerships and possibilities we hope to build around it.

Children and families are warmly welcome.

SENSE OF SUMMER

Sensory Art in the Making | Workshop

Tuesday 10 November | 4.00pm
Turbine Platform, Brisbane Powerhouse

Before the launch, children and families are invited to join us for Sense of Summer, a sensory art workshop where children become the artists.

What does summer feel like to you?

Children will explore their world through touch, sound, movement and imagination, before creating their own tactile memory of summer to add to a growing collective artwork. What they make will become part of the experience for the children who come next.

The workshop forms part of the first creative development of a new sensory arts experience being created with Deafblind children at its centre, with the ambition to grow into an experience for children of all abilities and their families. The development is deliberately child-led: the artwork begins incomplete, with each child contributing to what the next child encounters.

Children of all abilities and their families are warmly welcome.

Places are limited and bookings are essential.

Please note: Sense of Summer and the Alström Syndrome Australia Launch require separate registrations. If you would like to attend both, please register for each session separately.