ASAA National Committee
Our committee is made up of representatives from all over Australia and includes 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.
President
Fiona Lawton
Queensland
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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 (Uni Parental Disomy).
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 NDIS small business providing Support Coordination, Behaviour Support, Coaching and Training services, specialising in rare disease, communication disability and neurodevelopmental disorders. She is also a regular contributor to Source Mama magazine.
Fiona has been a ASAA Committee members since 2013 and President since 2020. She was a founding Board member of the Foundation for Angelman Syndrome Therapeutics (Australia) in 2010.
Vice President
Sue Hones
New South Wales
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Sue and Alanna
Sue lives in Newcastle with her husband Ross. They have three children. Their youngest, Alanna, has Angelman syndrome (Deletion) and she lives nearby in a Supported Independent Living house.
Sue is one of the founding families 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 retired primary school teacher and is interested in social inclusion and travel with Angelman syndrome.
Treasurer
Lysandra Callahan
Queensland
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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.
Annie and Max
Anne lives in Melbourne with her husband Matthijs and their two adult sons. Her youngest son Max has Angelman syndrome (Deletion).
Anne has a PhD in Biochemistry and many years ago worked as a medical researcher doing cancer research. She then worked in project management and has had Company Secretary roles at biotechnology start-up companies at the University of Melbourne.
After Max was diagnosed with Angelman Syndrome she got involved in the disability sector as an advocate, including actively lobbying for the introduction of the NDIS.
She has worked as a Policy Officer and then in the role of Director, at Children and Young People with Disability Australia, the national peak organisation representing children and young people with disability.
Anne is very committed to progressing the rights of people with disability, with particular interest in education, communication and inclusion.
Jasmine and Weston
Jasmine lives in Beaudesert QLD, on a beautiful little farm with her husband Carl and two children, Lydia 7 and Weston 5 (deletion).
Jasmine worked for ANZ Institutional Bank division for many years, before leaving to run a “paddock to plate” business with her husband and family. Since the birth of Weston, Jasmine has been devoted to ensuring he gets the therapy and care he required. Westy was diagnosed with Angelman Syndrome at 2.5yrs old.
Jasmine and her husband currently own and run a small cattle stud operation in the Scenic Rim.
Even though this journey is still relatively new for Jasmine and her family, she is passionate about advocating for inclusion and ensuring new families feel seen and welcome.
Vange and Jorja
Rachael and Robbie
Chrissy and Elliott
Chrissy lives in Melbourne with her husband Ben, son and two daughters. Their eldest, Elliott, has Angelman syndrome (Deletion).
She is a qualified nurse and works part time in Melbourne’s busiest Emergency Department looking after both adults and paediatric patients.
Chrissy joined the ASAA in 2018 and became the Victorian State Rep in 2023.
Chrissy helps run the social media of ASAA and is passionate about supporting families navigating this journey especially those who are newly diagnosed.
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.
David and Marcus
David lives in Melbourne with his wife Belinda, and two sons. Their eldest, Marcus, has Angelman syndrome (Deletion).
He is a qualified Australian Legal Practitioner specialising in commercial litigation including WorkCover, Motor Vehicle Accidents and Public Liability.
David is committed to bringing Angelman syndrome to the forefront of people’s minds in an endeavour to raise awareness.
David joined the ASAA in 2024.
Joelene and Jude
Joelene lives in Sydney with her husband Tom. Their only child, Jude, lives with Angelman syndrome (Deletion).
In 2024, Joelene joined ASAA and became the NSW State Representative.
Joelene is a dedicated advocate, practising as a solicitor. She is also a writer and regular contributor to the column on Angelman Syndrome News where she hopes to provide support and encouragement to caregivers.
Michelle and Rosalie
Michelle lives in Melbourne with her husband Coco and their three children. Their eldest child, Rosalie, has Angelman syndrome (Deletion).
Michelle holds a Bachelor of Commerce in Management and HR Management and has experience working in corporate HR within large organisations in the telecommunications, IT, and tertiary education sectors.
Following Rosalie’s diagnosis with Angelman syndrome and the difficulties in finding quality childcare and education for neurodivergent children, she became an advocate with Parenthood. Parenthood is a not-for-profit organisation that lobbies decision-makers to achieve policy changes related to paid parental leave, access to high-quality early childhood education, and family-friendly workplace policies.
Michelle joined ASAA in 2024 and aims to use her personal and professional experience to learn from the community, advocate, and support other families as they navigate their journeys.
Committee Member (Sibling)
Victoria
Judy lives in the town of Berwick, Victoria. She is a sibling of Sarah who lives with Angelman syndrome who is 57 years old.
Sarah is the youngest of five children, three living, and has two brothers who are 12 and 14 years older than her. Sarah continues to live in the family home with the support of a brother and his wife.
Judy has worked in many senior administrative roles within the Health and Education sector and is keen to use these skills for the benefit and support of families dealing with the complexities of Angelman syndrome.