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. We’re bringing together families, clinicians, researchers, rare disease and industry partners, and supporters to share what we know, what’s changing and where we can find hope for the future. We’ll share how Alström Syndrome Australia 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.

The evening will also offer a first glimpse of a new sensory arts experience being developed with Deafblind children at its centre. The creative development is led by creative producer Alyssa Kielty in collaboration with children and educators from Narbethong State Special School and a multidisciplinary creative team including textile artist Shannon Michaels, multi-award-winning production designer Josh McIntosh, Deafblind artist and accessibility advocate Joe Monteleone, inclusive music specialist Lee Strickland and theatre collective Art for Earthlings.

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.

Before the launch, children of all abilities and their families are invited to join us for Sense of Summer, a playful sensory workshop exploring the many ways we experience and know summer beyond what we can see.

What does summer feel like to you? Through texture, sound, movement, play and sensory exploration, children will create their own memories of summer and help shape the work as it develops. The workshop forms part of the first creative development of this new sensory arts experience, created with Deafblind children at its centre and with the ambition to grow into an experience for children of all abilities and their families.

Children of all abilities and their families are warmly invited. Places are limited and bookings are essential.

Sense of Summer and the Alström Syndrome Australia Launch can be booked together. Simply select tickets for each session before proceeding to checkout.