Welcome to the Angelman Syndrome Association Australia
The Angelman Syndrome Association Australia was founded on March 20,1993 at a meeting held at the St. George Hospital, Kogarah, NSW. The meeting was organised by a group of three interested parents, two leading medical professionals and fourteen families attended. During the meeting, plans were made for the first National Conference to be held later that same year, on October 30 and 31 in Sydney. More than 100 parents and professionals attended the conference from all over Australia. As a result, a National Association was formed with representatives from each State and Territory. The Association has blossomed since that time, mainly through the hard work of dedicated parents of children with Angelman syndrome and with the guidance of medical professionals.
The ASAA was established to support, inform, educate, network, promote research and to advocate for families affected by Angelman syndrome.
The Association's Objectives are:
to educate Angelman syndrome families, medical and educational communities and the general public about Angelman syndrome.
SUPPORT AND ADVOCACY:
management.and the condition, its treatment publiciseto establish national, regional and local support systems for persons with Angelman syndrome and their families and to
encourage medical and educational communities to undertake research for the benefit of families and individuals with Angelman syndrome.
FUNDRAISING: to provide services and support for Angelman syndrome individuals and their families.
Committee Member Profiles - Click here for contacts
Laura Greene (President)
My husband Shaun and I have two children with Angelman syndrome, Sophie 9 years, and Theo 6 years (UBE3A mutation). Sophie and Theo both attend Port Phillip Specialist School in Port Melbourne which they love. Their favourite pastimes are swimming, playgrounds and any activity that is sensory and messy. As a family we try to have an active life and in doing so use a Danish cargo bike to get around Melbourne, and Sophie loves using her own modified bike. Now Sophie and Theo are school age they attend after school gymnastics and swimming lessons to help with their motor skills. I have been on the ASAA committee since 2015 as Victorian State Representative, and I was the Co-ordinator of the 2016 ASAA National Conference in Melbourne. I am keen as National President to support the Australian Angelman community through the sharing of knowledge, resources, events, education, and networking. Being part of such a strong and close Angelman community has been so beneficial to myself and my family. I am passionate about other families joining this community, finding others who understand, share our unique stories and support each other.
Anne Funke (Vice President)
I am a working carer and provide full time care for my 22 year old son, Mitchell, who has Angelman Syndrome – UPD. I work part time as a Social Worker and disability carer advocate in two NSW Local Health Districts. I also hold 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. I am a parent advocate for the Angelman Syndrome Association of Australia and am currently a national committee member and a past National President. I have presented at and organised multiple workshops, seminars and conferences on Angelman Syndrome and carer specific issues to raise awareness. I was awarded the 2014 NSW Carer of the Year Award.
Fiona Lawton (National Secretary)
My husband Gerry and I live in Brisbane with our three teenage children; our youngest is Connor who has Angleman Syndrome (UPD). We love travelling, skiing, cooking, theatre and reading. Connor loves swimming, signing, musical theatre and movies. I have nearly 25 years working in global aviation, human factors and risk management, developing and implementing strategic plans, policy and multi-million dollar projects. I have tertiary qualifications in Cognitive Behavioural Psychology, Aviation and Human Factors. My not-for-profit experience ranges from working with the homeless in Brisbane (‘Rosie’s’), being a founding board member of Foundation for Angelman Syndrome Therapeutics (Australia), and a committee member for the C.A.R.E. Inc, a disability and aged care respite service provider. I joined the ASAA committee to provide timely information, resources and support to AS families, therapists and educators while advocating across the health, education, political sectors to ensure the best outcomes for our children.
Kevin Kennedy (National Treasurer)
My wife Simone and I were one of a few families who worked to form the Association in early 1993 with the help and guidance of Dr Robert Leitner and Dr Ellie Smith. My wife Simone held numerous roles in the Association since this time, including NSW Vice President, and National President for a long period of time. Simone was also President of IASO (International Angelman Syndrome Organisation) for three years. Sadly, Simone passed away from breast cancer in 2006. I have been involved with the Association since 1993 with membership records, compiling and publishing newsletters for many years, mail outs, administrative records and associated work, etc, as a committee member, and have been National Treasurer or Secretary since 2009. Simone and I have three children – Andrew 30 (del+), Emma 28 and Renee 24. I have been teaching Mathematics for 35 years, and have been in leadership positions in Catholic schools for most of this time.
Leticia Grant (WA contact)
I have qualifications in Human Resources and Public Relations and 30+ years’ experience in client service roles. I’ve previously worked in both my own small business and large corporate environments including hospitality, banking, and HR/recruitment industries. lived-experience as a mother to 2 daughters, with medical conditions, one with a trisomy of the X chromosome and epilepsy & another in her mid-teens with Angelman Syndrome UPD, has led me to a fulfilling career change and since 2012 I have worked in the not-for profit sector at Kalparrin, at Princess Margaret Hospital supporting families who have children with disability and I lead the Family Support Officer team. I have particular interests in advocacy, accessibility and inclusion, the elimination of restrictive practices and recognition and support for alternative means of communication for people with complex needs. A founding member of the Angelman Syndrome Association of WA (“ASAWA”) when it was established in 2007 and is the past Secretary, VP and current Chair. She coordinated two ASAWA initiatives. Their “Peer Mentor Program” which offered one-to-one mentoring from a fellow parent who was trained to help families with questions or issues characteristic to the Syndrome, and in the families’ dealings with service providers and health care professionals. Secondly, their “Communication Training” pilot program which enabled members with AS throughout WA to be trained by specialists to use hard copy & electronic communication (AACs) systems so as to have a voice in society. I was previously Secretary of the Angelman Syndrome Association Australia and have been on this National committee since 2009.
Peta Perrie (SA contact)
My name is Peta Perrie, I’m honoured to be the State Representative of South Australia and blessed to be part of such a supportive community. I’m a very busy mum to three children that seem to have a very full social life. Zac our oldest 16, Brodie 14 and our angel (UPD) Mia 10. My husband and I own a painting company, I work part time as a pharmacy assistant. I’m also on the subcommittee for fundraising with FAST Australia. I want to continue to share all of our experiences and hope that it in turn they never feel like they are alone. I love meeting newly diagnosed family members and feel extremely proud that we as a community provide comfort and hopefully we can give them knowledge along the way by sharing our experiences.
Sue Hones (NSW Contact)
My husband Ross and I live in suburban Newcastle with our daughter Alanna who has Angelman Syndrome (deletion +) Alanna is 28 and attends a community program. We have two older children who no longer live at home. We have been members of the association since its beginning, having attended the first meeting in Sydney in 1993. I teach part time and Ross is retired. We enjoy travelling within Australia as well as overseas. I believe that the ASAA is an invaluable resource for both parents and professionals.
Chloe Simons (TAS contact)
I am a Marine Science teacher in Southern Tasmania. I have worked with the Department of Education for 17 years in a variety of teaching roles involving science and technology. I have a Bachelor of Science, Bachelor of Education and Professional Honours in Science Education. I live in Hobart with my husband and three children. My oldest child Jed has Angelman syndrome (Del +). As a family we love the outdoors and get out camping, do water sports and snow boarding as much as we can.
Lysandra Callahan (QLD Contact)
Recently married to my wonderful husband Kieran, between us we have 5 children and two grandchildren. Life is always very busy. My son Joel is 13 years old, deletion +ve, lovable but challenging. The first 7 years of Joel’s life was spent in WA where I was a founding member of the Angelman Syndrome Association of WA and forged many a wonderful friendship in the Angelman Community. Due to Joel having a rough patch of hospitalisations and health issues with little support, I gave up my job as a call taker with the WA Police and moved back to QLD where my family lived and I had grown up. I decided on a complete career change due to Joel’s constant hospitalisations and recently finished my nursing degree inspired by the wonderful and dedicated professionals who helped us during those rough years. I am currently working as a registered nurse at a children’s hospital in QLD and loving it. I became involved with ASAA in 2009. I love to read, travel and scrapbook, however I am currently busy undertaking a postgraduate degree in Paediatrics. I love the Angelman community, the diversity of experience, wealth of knowledge and do not know where I would be without such an amazing Network who can make me laugh and feel inspired when challenges arise.
Kellie Wild (Committee Member)
I’m from Perth in Western Australia and live in Woodvale with my daughter Katie who is 13 and has Angelman Syndrome (deletion +ve). I’m a Registered Nurse and work part-time as a Mental Health Nurse Clinician with the Hospital in the Home team at Graylands Hospital, which is a large psychiatric hospital in Perth. Aside from working, I enjoy the great outdoors and try to get away camping, water-skiing and fishing regularly! I am a passionate follower of the AFL and my West Coast Eagles football team. I have been involved on the national committee since 2007 when I attended my first conference in Brisbane, originally as WA Vice President and more recently on general committee. I was a founding committee member of the Angelman Syndrome Association of WA and currently hold the Vice President role there. I had the challenging task of being the conference coordinator for the 2009 national conference which was held in Perth. I love contributing to the Angelman community, to share knowledge and advice, to chat about the good times and the bad and most of all I love being amongst people who understand what it is to be an “Angelmum”. My aim is to guide a motivated, supportive, friendly, proactive and dedicated committee to benefit this amazing Angelman community.
Kane Blackman (Committee Member)
Kane is a senior public relations executive with Western Australian State Government at the Insurance Commission, in the insurance, investments and disability space. He has more than 14 years' experience in the mining, oil and gas, and financial service sectors, and is a Chartered Secretary. He previously held executive positions in communications, operations, corporate affairs and governance for a range of multinational entities. Kane is the Deputy Chair of the not for profit entity Injury Matters, and sits on the Road Safety Council of WA and the WA Branch of the Governance Institute of Australia. Kane has a young son with Angelman Syndrome - the Imprinting Centre Defect type with no deletion.
Laura, Sophie and Theo
Anne and Mitchell
Fiona and Connor
Peta and Mia
Chloe and Jed
Kane and Finn