ASAA National Committee
Our committee is made up of representatives from all over Australia and include parents and siblings of people with Angelman syndrome.
We meet bi-monthly and work throughout the year to provide peer support for families while progressing our annual work program and delivering on our Strategic Plan.
The committee provide support for AS families, and provide assistance and information on AS to medical and allied health professionals, elected representatives, and the media.
If you are a newly diagnosed family or needing some support, please contact a committee member in your state or a member of the Executive.
Fiona and Connor
Fiona grew up in Melbourne and lives in Brisbane with her husband Gerry and has a daughter and two sons – her youngest child, Connor, has Angelman syndrome (UPD).
Fiona has over 25 years in the federal government sector, with more than 15 years in senior management and developing and implementing policy, regulations and frameworks across risk management, safety and community engagement.
With qualifications in neuropsychology and cognitive behavioural therapy, she runs a small business as an NDIS Support Coordinator, specialising in neurodevelopmental disorders.
Fiona was a founding Board member of the Foundation for Angelman Syndrome Therapeutics (Australia) in 2010.
Kane and Finn
Kane grew up in Melbourne and lives in Perth with his wife Sarah, and has two sons – his eldest, Finn, has Angelman syndrome (ICD).
He is a senior public relations executive with the Western Australian State Government at the Insurance Commission, which delivers personal injury and liability insurance schemes, lifetime care and an investment portfolio.
Kane has more than 15 years’ experience in the mining, oil and gas, and financial service sectors, and is a Charted Secretary and lecturer in corporate governance. Kane is also on the WA State Committee of the Governance Institute.
Kane is Deputy Chair of Rare Voices Australia, Director of Therapy Focus (WA), and sits on two Ministerial Advisory Councils for Precision Health and Disability in Western Australia.
Kevin and Andrew
Kevin lives in Sydney and has one son and two daughters – his son, Andrew, is the eldest and has Angelman syndrome (Deletion).
Kevin and his wife Simone were founding families of the ASAA from early 1993, and both dedicated themselves to the association, holding numerous senior positions over several decades. Simone was President of the ASAA for many years, and also President of IASO (International Angelman Syndrome Organisation) for three years before sadly passing away from breast cancer in 2006.
Kevin is a teacher with over 37 years’ experience, specialising in Mathematics and IT, and has held leadership positions in Catholic schools for over three decades.
He has also been a member of the L’Arche Sydney Board for 7 years in the recent past.
Sally and Stephanie
Sally lives in Melbourne and her younger sister, Stephanie, has Angelman syndrome (Deletion).
She joined the ASAA in 2018 to represent the siblings of persons with Angelman syndrome, as well as to use her skills and experience to support the advocacy and research promotion pillars of the ASAA’s Strategic Plan.
Sally is dedicated to improving the development and implementation of genomic medicine in Australia and is currently the Project Management Lead at the Centre for Population Genomics – a collaboration between the Murdoch Children’s Research Institute in Melbourne and the Garvan Institute of Medical Research in Sydney. She also has experience in health economics and strategy consulting, and in clinical research.
Sally holds qualifications in biomedical science (genetics) and public health (health economics). Sally’s previous experience includes strategy consulting and clinical research.
Laura and Sophie and Theo
Laura is originally from the UK and lives in Melbourne with her husband, daughter Sophie and son Theo, who both have Angelman syndrome (UBE3A mutation).
Laura has been on the committee since 2015, and as the former National President of ASAA she established the Memorandum of Understanding with FAST (Australia), created the NDIS Guide for Angelman syndrome and coordinated the 2016 and 2018 ASAA National Conferences. Laura is the family liaison for the Melbourne AS Clinic held at the Royal Children’s Hospital, Parkville.
Laura is qualified as a diagnostic radiographer, working in large hospital settings in London and Melbourne. Laura’s husband, Shaun, is an Emergency Physician and Clinical Toxicologist.
Laura has a particular interest in Angelman syndrome and communication (AAC). She is a member of AGOSCI, a group that focuses on complex communication needs, and has liaised with Scope Victoria in the development of communication tools. She is a regular guest speaker at an AAC parent user group in Victoria.
Chrissy and Elliott
Chrissy lives in Melbourne with her husband Ben and their son and daughter. Their eldest, Elliott, has Angelman Syndrome (Deletion).
She is a qualified nurse that specialises in coordinating complex medical patients, providing them education and support.
Chrissy joined the ASAA in 2018 and is interested in helping newly diagnosed families and helping them chart their course.
Sue and Alanna
Sue lives in Newcastle with her husband Ross and their adult daughter. She has three children, their youngest Alanna has Angelman syndrome (Deletion).
Sue is a founding family with ASAA, having attended the first meeting in Sydney in 1993 and has continued to make a valuable contribution for nearly three decades.
She is a part-time teacher and is interested in social inclusion and travel with Angelman syndrome.
Paul and Sebastian
Paul lives in Canberra with his wife Felicity their three sons. His middle son, Sebastian has Angelman syndrome (Deletion).
Paul has a Masters degrees in linguistics and education and has previously worked as a teacher and an education administration.
He currently works a senior manager in education governance and student management at the Australian Nation University, in Canberra, and is also pursuing research into language acquisition in non-verbal children.
Paul has previously been a Board member of Friends of Brain Injured Children Inc. and is also a member, and past president, of Manuka Childcare Association Inc. a not for profit early learning centre in Canberra.
Paul’s wife Felicity is currently on the Board of FAST (Australia).
Vange and Jorja
Dianne and Daniel
Dianne lives in Darwin with her husband Todd and four boys. Her youngest child, Daniel, has Angelman Syndrome (UPD).
Lysandra and Joel
Lysandra grew up in Queensland, lived in Western Australia for over two decades, and now lives in Brisbane with her husband Kieran, and their five children and two grandchildren. Joel, the middle child, has Angelman syndrome (Deletion).
Lysandra is a qualified nurse working in the Emergency Department at Queensland Children’s Hospital.
Lysandra is a founding member of the Angelman Syndrome Association of WA (ASAWA), and has forged many a wonderful friendship in the Angelman community.
She has been involved with ASAA since 2009 and has held several executive positions.
Chloe and Jed
Chloe lives in Hobart with her husband and their three children. Her eldest son, Jed, has Angelman syndrome.
Chloe has been a marine science teacher in southern Tasmania for over 17 years. She has previously worked in environmental science, STEM and education of students with disabilities.
Chloe has a particular interest in genetics and neurology and has been on the Board of FAST (Australia) for over a decade and assisted in the development of the Global Angelman Registry.
She is also currently the Chief Science Officer for FAST (Australia).