2023 National Conference - Shaping the Future Together
In February 2023 we held the first collaborative conference of the Angelman Syndrome Association Australia and Foundation for Angelman Syndrome Therapeutics Australia. Held in Brisbane, Queensland, over 150 families, clinicians, researchers and supporters came together to share learning about the latest research, clinical trials, therapies, practical and family support, NDIS, and much more.
We also marked the 30th anniversary of Angelman Syndrome Association Australia with a beautiful champagne reception under the stars and recognised many of our founding families, committee members and past ASAA presidents. Angelman syndrome organisations, across the globe also sent messages of congratulations and we heard from Professor Bernard Dan, Dr Robert Leitner and ASAA founding member and long standing Committee member, Kevin Kennedy.
We are very grateful to our wonderful sponsors whose contribution to our 30-Year Celebration and support for the in-house and community Angelman activities during the conference made the events possible.
Sponsors Details – Click on the links below to learn more about our sponsors!
Fit Your Ability (National) – NDIS Registered Personal Trainers providing a range of recreation & community programs and in-home physical therapy support
NAPA (National) – NAPA Centre is dedicated to delivering innovative therapy services to children with a variety of neurological and developmental needs
Sameview (National) – an online platform that provides one place to connect and share disability care information between families and their teams
What Ability (National) – NDIS Registered provider of social and community access disability support across Australia: day programs, weekend support and overnight camps.
Daydream Explorers (Qld) – NDIS Registered provider of supported social and capacity-building adventures across southeast Queensland including day & overnight adventures, camps and Short Term Accommodation.
Our Shining Stars (Qld) – offers all quality disability support respite care, emergency respite, Supported Independent Living, Short-term Accommodation, community access and daily living support, and in-home support services
Precious Angels (Qld) – NDIS Registered provider of complex, high-intensity disability support including Short-term Accommodation, community access, daily living support, and in-home support services
Ruby & Ollie’s All Abilities Care (Qld) – provides all abilities childcare in centres, and disability support in the home and community
The Comprehensive Health Assessment Program empowers people with intellectual disabilities to lead healthy and active lives through annual health assessments.
It is a questionnaire that documents the patient’s health history and provides the GP with prompts and guidelines relating to health issues.
There is one version for adolescents and one version for adults.
THE EXPERT BEHIND THE CHAP
Professor Nick Lennox is from UQs Faculty of Medicine and is the former director of the Queensland Centre for Intellectual and Developmental Disability (QCIDD).
Professor Lennox has specialised in the health of adults with intellectual disability since 1992, developing the CHAP in 1999. He successfully advocated for systemic change at local, state, national, and international level including the introduction of a health assessment Medicare payment system to support GPs to perform these assessments on people with an intellectual disability. Professor Lennox continues to advocate at all levels to promote and support the uptake of annual health assessments across Australia through his advisory and consultancy work.
The following resources have been developed by ASAA to assist people with Angelman syndrome in understanding what is involved in trips to the hospital:
Thank you to everyone who contributed to the Sibling Tribute video shown at the conference. It was one of the favourite moments for many families!
Siblings of children with rare disease are in a unique role. This series, Siblings Stories, developed by ASF (USA), AS families & Dr Jess Duis and others, highlights that role using real and fictional stories to discuss the dynamic aspects of being a sibling to a child with Angelman syndrome. We hope that siblings connect with these characters, find community in each story, and share these with their classmates, friends, and family!
To order these books through Amazon, click here:
2018 National Conference
5th-7th October 2018 marked the 12th Angelman Syndrome Association Australia National Conference “From Strength to Strength”
More than 150 delegates again gathered in Adelaide to hear from world leading experts about different aspects of Angelman syndrome, management strategies, and current research. The theme of “From Strength to Strength” was well addressed by both speakers and exhibitors. We were fortunate to have a number of Keynote Speakers over the course of the two days: especially Professor Bernard Dan (Belgium), and Professor Chris Oliver (UK). A range of issues were covered by these experts and other invited speakers including genetic mechanisms, how our understanding of Angelman syndrome has changed over time, AS behavioural phenotype, current and future treatments or therapies, understanding behaviour and management strategies, sleep in Angelman syndrome, communication, AAC, the Global Angelman Registry, NDIS, sibling relationships, ageing Angel issues, etc. It was a wonderful few days of education, and a great opportunity to learn from fellow Angelman syndrome families, seeing friends old and new.
Access the Conference Program here.
Dr Shaun Greene
Advances in genetic medicine mean that theoretically it may be possible to develop beneficial therapies for individuals with AS. There remain many challenges to overcome between theory and actual availability of approved medications. This presentation helps families and friends of AS individuals understand the challenges and processes that researchers and clinicians face in their quest to improve the lives of individuals with AS.
Professor Bernard Dan
Which treatments are available for various health issues in Angelman syndrome? How do we design a relevant and effective management plan? What can we learn from other conditions? Which advances has research brought us and what is in the pipeline?
Associate Professor Honey Heussler
We know that children with Angelman syndrome have poor sleep. This also features highly in the priorities for families in looking for support and therapies. However, the prevalence changes across ages. Main areas of concern are sleep initiation and night time waking. Examples will be given of how your Global Registry is helping understand these issues. Normal sleep will be discussed in the context of how this relates to the challenges we see in children with Angelman syndrome. Challenges exist around measurement of sleep which has limited our understanding to date. We can respond however and modify sleep using specific behavioural strategies and occasionally therapeutics.
With two Angels, Laura has attended many speech therapy sessions with several different therapists. Unsurprisingly their journey with communication began with zero knowledge of Alternative and Augmentative Communication (AAC), but since then has encompassed low and high tech AAC and a realisation that using symbolic language is not only a form of communication but it also aids the children’s understanding of the world around them and how to function. This talk will discuss the types of AAC used by the Greene family, the benefits and challenges they have experienced plus some useful resources that you can try yourself.
In our enthusiasm and dedication to help our children, students and clients learn new communication methods and skills, what can we do to provide them with opportunities to learn as well as to develop the confidence to use new skills and actively participate in conversation and interaction? Research shows that one of the most key indicators for achieving competent communication for those who have little or now speech is their communication environment, and in particular, their communication partners. This doesn’t mean just mum and dad. It includes all of us, and the different roles we play in a person’s life. This presentation will discuss the habits, interaction styles and strategies used by good communication partners, and how these can scaffold and support the development of communicative competence for people who use have complex communication needs and their participation within their families, social groups and communities.
Michael has had his NDIS package since September 2017 and the journey of self-managing those funds has provided many opportunities for his increasing independence. This includes moving out of home, and greater options for recreational activities and choice.
The presentation looks at some of the benefits and challenges of this NDIS option, such as building direct relationships with those providing support, and managing communication to enhance that support.
Challenges faced include finding and maintaining the right people, training new support people, and maintaining enthusiasm.
This is example of self-management for a person with AS and high needs – it’s not perfect, and there’s still a way to go, however, there are lessons to learn, and great leaps forward in the quality of life that Mike has achieved.
Anne Funke & Lif O’Connor
The A2D TogetherFolder is a tool to help carers and families share their knowledge and recent medical details of the person they care for with all staff involved in providing health care. It was developed using co-design methodology to provide current, relevant information to enable health staff to provide safe and person centred care. The overall aim of the A2D TogetherFolder is to ensure that when the person goes to hospital their needs are met and their hospital journey, from their “Admission2Discharge” is a seamless as possible.
Face-to-face education modules support ongoing implementation for carers, health and disability support staff and the www.a2dhealthcare on-line toolkit.
2016 National Conference
On 7th and 8th October 2016 more than 150 delegates gathered in Melbourne to hear from world leading experts about different aspects of Angelman syndrome, management strategies, and current research. The theme of “Finding Our Voice” was well addressed by both speakers and exhibitors. We were fortunate to have four Keynote Speakers over the course of the two days: Professor Bernard Dan (Belgium), Professor Chris Oliver (UK), Professor Ingrid Scheffer (Melbourne), and Mary-Louise Bertram (Perth). A range of issues were covered by these experts including genetic mechanisms, how our understanding of Angelman syndrome has changed over time, understanding behaviour and management strategies, sleep (or lack of), communication, AAC, literacy and epilepsy.
Our other invited speakers covered topics including Video Self Modelling, the Angelman Registry, how to support siblings, NDIS, Estate Planning, and Sensory Processing. It was a wonderful few days of education, and a great opportunity to learn from fellow Angelman syndrome families, seeing friends old and new. We hope our families have returned home better informed, supported, and with strategies that they can action to improve their children’s lives.
Professor Bernard Dan is a Paediatric Neurologist from Belgium with long standing implications in various clinical practice and research relating to Angelman syndrome, as well as support and advocacy groups.
Chris Oliver is the Professor of Neuro-developmental Disorders at the University of Birmingham in the UK and director of the cerebra centre for neurodevelopmental disorders. Chris speaks about Understanding and Changing Behaviour in Children with Angelman syndrome: Walk a Mile in my shoes.
Anthea Naylor is passionate about Video Peer Modelling and Video Self Modelling and it’s benefits in engaging and transforming students, especially those with special needs who are usually visual learners.
Charlene Cullen is working as an assistive technology specialist with Link Assistive or Link AT and has specialist skills and a passion for AAC (Augmentative and Alternative Communication) and Assistive Technology.
Karen Bloomberg presented on Communication in the Community and AAC (Augmentative and Alternative Communication) Interaction Strategies for Intentional and Unintentional Communication.
Professor Ingris Scheffer is a Paediatric Neurologist and professor at the Austin Health & Royal Children’s Hospital University of Melbourne and Florey Institute of Neuroscience & Mental Health
Mary-Louise Bertram’s is a qualified early childhood educator from Perth with special qualifications and training in the areas of communication AAC, sensory processing and literacy supports for children with complex disabilities.
Charmaine Bernie – Research Occupational Therapist: “Sensory Processing in Young People With Developmental & Social Communication Disorders”.
PowerPoint Presentation Only – No Sound
Peta Perrie: “Our Experience with the NDIS, How it has Positively Affected Mia and our Family and How to be NDIS Ready”
PowerPoint Presentation Only – No Sound
Debby Conlon Presentation: Association for Children with a Disability – “Growing Together”, 8th October 2016
PowerPoint Presentation Only – No Sound