12th Angelman Syndrome Association Australia National Conference “From Strength to Strength”
Associate Professor Helen (Honey) Heussler
Honey is a Developmental and Behavioural Paediatrician with dual Sleep Physician qualification. She completed her doctorate in 2008 through the University of Nottingham and has been working at the Mater Children’s Hospital since 2003. She is an Associate Professor with the University of Queensland and is Director of Developmental Paediatrics, as well as having clinical responsibility in Behavioural and Sleep clinics at the Mater Children’s Hospital. Honey has a specialist interest in Angelman syndrome. Honey is a Member of the FAST Australia Scientific Advisory Board, and has been instrumental is establishing the Global Angelman Syndrome Registry.
Jaquie Mills has four sons with her partner Darryl, two with disability. Her eldest son is 27 and has Angelman syndrome. She is a founding member of the Angelman Syndrome Association of WA and has worked in a wide range of areas related to the support of people with complex communication needs and challenging behaviour. She developed the ‘Is There a Better Way’ training which is now in its 5th year of helping families, schools and services struggling with challenging behaviour, and managed the development of the Graduate Certificate in Complex Communication Needs at Edith Cowan University in WA. Jaquie also facilitates a weekly communication and literacy group for adults with complex needs. In her role as developer of the microboard model of support, Jaquie assists families to plan, problem solve and safeguard the supports for their family member, as well as effectively recruit, manage and train staff.
In 2016 Jaquie received the WA Community Citizen of the Year award for her years supporting people with disability and disadvantaged children, and in 2017 she was a finalist in the West Australian of the Year awards in recognition of her work developing the microboard model, supporting people with complex communication needs and behaviours which can be challenging.
Janelle Sampson is a Speech Pathologist with over 25 years of experience both in Australia and Canada. Janelle is the founder of Two Way Street, and her passion is working with children and adults with complex communications needs who use Augmentative and Alternative Communication (AAC). Janelle has implemented a wide range of AAC systems (electronic and non-electronic) with individuals in all settings including home, childcare, schools (mainstream and supported learning), and in the workplace or social setting. She has a strong focus on integration of communication into ‘real’ life experiences, relationships and learning, as well as ensuring that their AAC systems and strategies are suitable for the development of strong emotional competence for individuals with complex communication needs. Janelle is also interested in alternate methods of service delivery that build capacity around the individual, and reduce the reliance on 1:1 intervention.
Meagan Cross' qualifications are in Geographic Information Science (GIS). Meagan also has experience in data programming, website and database design. She is a small business owner, dividing her time running a specialised Stainless Steel Fabrication business with husband and providing consultant GIS & mapping services to a diverse range of clients. Meagan serves on the board of directors of the US Foundation for Angelman Syndrome Therapeutics. She has two daughters, the youngest has Angelman syndrome.
Lif is the Clinical Nurse Consultant for the Metro-Regional-Intellectual-Disability Network (MRID) in South Eastern Sydney Local Health District. Lif joined the MRID from the Agency of Clinical Innovation Transition Care Network where she supported young people with chronic illness and disability during the move from paediatric to adult services. As a Registered Nurse with qualifications in General Nursing and Mental Health/Intellectual Disability, Lif has held a variety of positions including Clinical Instructor in Acute Psychiatry and IntellectualDisability, guest lecturer at Sydney University and Patient Flow Manager. Lif has worked with children, young people and adults with intellectual disabilities for more than 15 years. This work includes participation in the development of the A2D Together project and statewide consultancy via the Metro Regional Disability Network.
Effie Pearson is in her final year of her PhD looking at ‘Communication in Angelman syndrome’ at the Cerebra Centre for Neurodevelopmental Disorders at the University of Birmingham, UK. She received a first class honours degree in MSci Psychology and Psychological Practice from the University of Birmingham in 2015. During this time, Effie completed a placement year at the Cerebra Centre working on a project investigating self-injurious behaviour in non-verbal children with autism spectrum disorder. Her main research interests lie in the field of intellectual disability and neurodevelopmental disorders with a particular focus on behavioural and cognitive characteristics of rare genetic syndromes.
Dawn is a Senior Lecturer in the Autism Centre of Excellence at the School of Education and Professional Studies, Griffith University. She completed her undergraduate and PhD with Chris Oliver at University of Birmingham, UK, before moving to Southampton University (UK) to complete her Clinical Psychology Doctorate. Dawn has also completed a Postgraduate Diploma in Paediatric Neuropsychology at the University College London. Dawn's areas of interest and expertise include behavioural and emotional profiles (including mental health, i.e. anxiety) in autism, intellectual and developmental disabilities and rare genetic syndromes and the impact that these profiles may have on the individual themselves, their family, school or other professionals.
Dawn has worked with a range of parent support groups, helping them with their research priorities, feeding back results to parent conferences and providing research overviews in lay language. She worked alongside Jill Clayon-Smith and Bernard Dan to develop the International Angelman Syndrome Management Guidelines. Working with Chris Oliver, she has published book chapters and research articles on the laughing and smiling behaviours and challenging behaviours in individuals with Angelman syndrome and also the experience of parenting a child with Angelman syndrome. She has also led some of the first longitudinal studies in children with Angelman syndrome. Since relocating to Brisbane, Dawn has been working with Honey Heussler to combine their psychological and medical knowledge to further the Australian research into Angelman syndrome.
Dr Shaun Greene
Shaun is an Emergency Physician and Clinical Toxicologist based at the Austin Hospital in Victoria. Shaun completed his Masters focused on genetics and toxicology. As a physician with some knowledge of genetics and as a parent of two children with Angelman syndrome (UBE3A mutation) Shaun is in a unique position to offer a parental perspective on the current development of therapies for Angelman syndrome.
Sam Boag is a qualified physiotherapist with more than 20 years of specialist experience in the health and disability services sector, both as a therapist and manager. She is the founder of I Can Jump Puddles – an NDIS Registered Provider for Early Childhood Intervention and Support Coordination, and co-creator of the innovative Puddles Aquatics learn to swim program for children with special needs. Sam has a deep understanding of the complex new NDIS, and the variety of supports available for people with disability. Sam has been involved in the rollout and implementation of the NDIS since its inception in SA and is a passionate advocate in helping those with additional needs access their local community and feel included.
Kate, after careers as a hospital scientist, health educator and counsellor, and print/radio journalist, established Siblings Australia in 1999. Since then she has been invited to present across Australia and overseas to siblings, parents and professionals. Her book Siblings has been published in Australia, the UK and the US (as Being the Other One), and has been translated into Korean. She has developed a range of Siblings Australia resources and services and brings her own personal experience to the position, having grown up with an older sister with cerebral palsy. The focus of Siblings Australia is on siblings of children and adults with disability or chronic illness, and over a period of 18 years it has developed a national and international reputation for its work with families and professionals.
Kati Balla is a Conductive Education teacher/Conductor at Kidman Park Primary School in Adelaide. She initially trained as a nurse in Hungary in 1990, and realised she had a special connection with children with disabilities. After completing a degree in Conductive Pedagogy- a Hungarian technique that emphasises a holistic approach to disabled learning- she has worked with children all around the world before settling in SA in 2003. Kati was nominated Australian of the Day in 2016 as part of Commonwealth Bank awards. Kati currently has two children with Angelman syndrome in her class and has attended an Angelman Syndrome forum to better understand the particular challenges facing AS children.
Anne is a working carer who provides full time care for her 21-year-old son, Mitchell, who has Angelman Syndrome – UPD. She works part time as a Social Worker and disability carer advocate in two NSW Local Health Districts. She also holds several voluntary positions in the community; as a Community representative on the School Council Committee for Caroline Chisholm Special School Padstow, a representative on the NSW Carers Advisory Council and a board member on the Carer Support Service Sutherland. She is a parent advocate for the Angelman Syndrome Association of Australia and she is currently a national committee member and a past National President. Anne has presented at and organised multiple workshops, seminars and conferences on Angelman syndrome and carer specific issues to raise awareness. Anne was awarded the 2014 NSW Carer of the Year Award.
Dr Alexis Berry
Dr Alexis Berry is an Adult Rehabilitation Physician in the Disability Assessment and Rehabilitation Team for Young People based at Concord Hospital, Sydney. She previously worked at Developmental Assessment Service, St George Hospital where a large part of her role was in Transition Clinics. She is a member of the Transition Executive, Agency for Clinical Innovation, NSW.