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.
President
Fiona Lawton
Queensland
0488 996 181
Email Fiona
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, Coaching and Training services, specialising in rare disease, communication disability and neurodevelopmental disorders.
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
0414 648 628
Email Sue
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
0413 332 509
Email Lysandra
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.
Rosalie and Tynan
Rosalie is originally from Darwin and currently lives on the Sunshine Coast with her two children. Her eldest, Tynan has Angelman syndrome (UBE3A mutation).
Rosalie is currently studying a Bachelor of Counselling, is a Breathwork Facilitator with a passion for a holistic approach to health, somatic experiencing and embodiment.
Rosalie was first introduced to Angelman syndrome when Tynan was 3.5 years of age after a long and difficult diagnostic journey.
She is compassionate and a strong advocate and devoted to supporting families going through any phase of life and circumstances.
This is Rosalie’s first committee position.
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.
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).
SA/NT Representative
Evangelos (Vange) Ignatiou
South Australia
0417 840 922 Email Vange
Vange and Jorje
Rachael and Robbie
Leticia and Allara
Leticia grew up in Sydney but has lived in Western Australia for 25 years with her husband Kelvin, and their two daughters. Allara, her eldest child, has Angelman syndrome (Uni Parental Disomy).
With qualifications in Community Services, Public Relations and Human Resources, Leticia has professional experience and customer/client service proficiencies gained across various industries – recruitment, hotels, banking, retail, small business and beauty.
Her lived experience since 2000 parenting Allara, led her to a fulfilling career change doing Family Support within the Perth Children’s Hospital for 7 years and for the past 2 years she has worked as a Disability Advocate.
Leticia has broad Board member experience across the disability and Genetic Support sectors and is a founding member of the Angelman Syndrome Association of WA. She recently retired from her role as President which she held for 12 years in addition to positions as Secretary & Vice President since it’s incorporation in 2007.
She has been involved with ASAA since 2009 and has previously held executive positions and is pleased to be able to contribute again as WA Representative.