12th Angelman Syndrome Association Australia National Conference “From Strength to Strength”
5th-7th October 2018
On 5th and 7th October 2018 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.
[Presentations can only be uploaded with the permission of the Presenter. A number of presentations at the Conference contain material that had not yet been published, and therefore could not be uploaded for public viewing]
"I Can" Video
AS Gene Therapies: Promises and Challenges: (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 will help 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.
PDFs of a number of Presentations:
Click on the Title of the Presentation to view
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?
With two Angels over the years I have attended many speech therapy sessions with several different therapists. Unsurprisingly our 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 our family, the benefits and challenges we have experienced plus some useful resources that you can try yourself.
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.
The vision has been to support Mike to have a life that any of us would want, and to move away from historical forms of shared living for people with disability. We’ll look at achievements, the impacts on choice, and flexibility in using funds.
There are challenges for family, and the presentation will also consider the time and skills required, along with future plans for sustainability of this model.
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.
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.
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.
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 on-line toolkit.