ANGELMAN SYNDROME

This session discovers how systemic advocacy serves as a vital tool in driving change for the Angelman syndrome community. By uniting our voices and efforts and working collaboratively with State and Federal Government and other peak disability organisations, we can address structural barriers, influence policy, and champion the rights of individuals and families living with Angelman syndrome, to improve overall quality of life.

Erin Papps (Advocacy and Policy Manager at Down Syndrome Australia)

The ASAA is a member of the DRO Consortium, which represents and advocates for individuals with intellectual disabilities and chromosomal variations. Erin from Down Syndrome Australia — the lead organisation of the Consortium—will provide an overview of how the Consortium has been engaging with the Federal Government to ensure our voices are at the table. DRO advocacy work addresses the key issues of: prenatal screening, health, NDIS, education, employment and migration.

A/Professor Rebecca Koncz (Chair of Intellectual Disability Mental Health, National Centre of Excellence in Intellectual Disability Health)

Families often report that physical or mental health and behavioural concerns for relatives with Angelman syndrome are dismissed as ‘just part of Angelman Syndrome’, even when some issues could be prevented or even treated. Rebecca will discuss strategies for managing symptoms of neurodevelopmental disorders like Angelman syndrome and how to effectively advocate for necessary care to improve quality of life.

Victoria White (The Growing Space, Specialist Support Coordinator), Fiona Lawton (President of ASAA, CEO at Neu Pathways Australia), My Plan Manager (representative)

This panel session is not one you are going to want to miss! In a time with significant change and disruption to NDIS, we have brought together frontline service providers and policy experts to help you navigate what you need to know, what you need to do and how you need to do it. The discussion will offer guidance to ensure the NDIS accommodates the complex needs for people with Angelman Syndrome including funding and high-level support.

This session will explore innovative strategies and resources to support carers of people with Angelman syndrome to help improve both their quality of life and that of those being cared for.

Stacey Touma (Foundational CEO at Belongside Families), Sylvana Mahmic (CEO at Plumtree Children’s Services), Lived experience representatives (TBC)

This panel will focus on caregiving across all ages. These caregivers, siblings and expert speakers will address challenges at each stage of life, sharing support strategies, and discuss the value of community and family in supporting caregivers and the people they care for.

Professor Nikhil Thapar (Director of the Gastroenterology, Hepatology and Liver Transplant Services at Queensland Children’s Hospital - pre-recorded video), Dr Vinita Prasad (Developmental Paediatrician and Child Development, QLD Children’s hospital)

Gut-related concerns are common among people with Angelman syndrome, and topics such as reflux, constipation, and cyclic vomiting etc, frequently appear on AS social media pages. Professor Thapar and Dr Vinita Prasad, will address the importance of gut health and its effects on the overall wellbeing of people with Angelman syndrome. They will discuss multiple aspects of holistic gut health, including the function of the gut biome in symptom management, and cover dietary interventions, probiotics, and other approaches to promote a healthy gut environment.

Afternoon sessions are divided into Early years, School years, and Independent years. Join the session group that fits your or your loved one’s stage for focused discussion and advice.