Liz Stanley (Vice President)
Liz Stanley has been involved in the not-for-profit sector in the area of disability for 35 years following the birth of her third child who was diagnosed with Angelman syndrome.  Liz has been a National committee member of Angelman Syndrome Association Australia for 22 years with a three year term of National President 2010 to 2013, and is currently Vice President. She has an extensive knowledge of Angelman syndrome and the impact this has on families. She has been an office-bearer and committee member of the Angelman Syndrome Association of Western Australia since its inception in2009. During the school years Liz was active on the local P & C committees and Liz has presented tutorials to both medical and nursing students on the impact disability has on families. Liz and her husband Chris established a small manufacturing, wholesaling and retailing small business 18 years ago in Perth which keeps them busy six days a week. The financial skills necessary to operate her business are skills which are essential to the running of a not-for-profit association.  She has an understanding of budgets, profit and loss and Balance Sheet, the ATO and activity statement reporting.

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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.

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Sally Shackcloth (Newsletter Publisher)
Hannah, my third child, was born in 1989 and I have been involved with the Angelman world since the first national conference held in Sydney in 1993. My husband, David, and I took Hannah to the conference where Dr Leitner and Dr Ellie Smith were able to provide a clinical diagnosis of Angelman syndrome. We were pleased to have a diagnosis after many years of not knowing the cause of her disability. I am really grateful for that early group of parents who worked so hard raising awareness and setting up the association. I worked as a primary school teacher but had quite a few years out of the workforce when my children were young. I returned to part-time work once things became easier with Hannah’s epilepsy. My first job was as an adult literacy tutor then I moved on to working in a kindergarten as a teacher aide. Later, I worked as a special aide supporting children with special needs in mainstream classes and in early intervention. One accomplishment at this time was working with a group of parents and supporters helping set up a new children’s respite centre. Hannah lived there part-time from the age of 14-19. During the last few years I have been retired from paid work but have been busy (with my siblings!) helping our parents so they were able to stay in their home as well as helping occasionally with three young grand-daughters. Hannah lives in a L’Arche home but comes home for weekend visits once per month. I am still involved with decision-making such as NDIS plans and medical appointments. David and I really enjoy meeting other families as we know only they can really understand how our lives are when a family member has Angelman syndrome.

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Diana Backhouse (QLD contact)
Hi everyone, I sort of accidentally fell into this role as someone was needed to fill the QLD position on the day nominations closed! So not really sure of my role and have never really been part of a committee but very happy to be part of it. My husband Ed and I have three children, Joshua who is 6, Timothy who is our angelman child and he's 4, and our youngest Lillian is 1. I’m a stay at home mum but a teacher by trade. I've just enrolled to do the graduate certificate offered by Edith Cowan university in WA in special education (complex communication needs) next year.

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Peta Perrie (SA contact)
Hi everyone, I’m a very busy mum to three children that seem to have a very full social life. Zac our oldest 13, Brodie 12 and our angel (UPD) Mia 8. I’m very new to being part of a committee, so appreciate any guidance along the way. I’m really excited and honoured to take on this role to be there for other families. I want to share all of our experiences and hope that it makes them feel like they aren’t alone. My husband and I have a painting company and I work part time as a pharmacy assistant. I’m also on the subcommittee for fundraising with FAST Australia. I’ve already had a couple of phone calls from newly diagnosed family members and found it extremely rewarding that I provided them comfort and hopefully I can give them knowledge along the way. My aim is to get some things happening in SA more family events and friendships.

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Chloe Simons (TAS contact)
Hello!  My husband Mick and I live in Hobart with our 3 children, Jed (9) is Del +. I work in the area of science and technology with the Tas Dept of Education. I am a board member of FAST and have been involved in this position since 2008. I have been the TAS State Representative for the last few years, sharing this position with Sally Shackcloth. I am extremely interested in genetics, neurology, pharmacology and challenging behaviour in children with AS. Our son Jed uses an iPad very effectively for communication and I am a big fan of this technology for allowing him to have speech! The Tasmanian AS community is few and far-between. Due to our small numbers and us all being so dispersed, it is rare that we are able to meet as a group, however, I feel that I am able to act as a mentor to newly diagnosed families and therefore I am happy to be in the role of TAS State Rep.

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Laura Greene (VIC contact)
My husband Shaun and I have 2 children with Angelman syndrome, Sophie 7 years, and Theo 4 years (UBE3A mutation). I am originally from the UK and Shaun from New Zealand, but we have called Melbourne home for the last 10 years. We live centrally in South Yarra. By profession I am a radiographer having worked at several hospitals in London and at St Vincents in Melbourne, running CT and MRI scanning services. My husband is an Emergency Physician at the Austin Hospital. I am currently a full time mum, as although Sophie is in her 2nd year at a specialist school, Theo still has another year of kinder. I am keen as Vic State Rep to engage with the Victorian Angelman community, linking ASA membership, Facebook group membership, and those out there with no support system in place.

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Anne Funke (NSW contact)
I am married to Fritz and parent to Laura now 21 and Mitchell (AS _ UPD) now aged 19 years old. Just went through transition to adult services and survived to tell the tale! Graduated with Social Work degree in 1984 and have been working in various roles over the years. I currently work in 2 separate part time jobs within NSW Health equivalent to full time- hence the 2 separate email addresses and home one as well! I work in HR and Injury management /rehab at one hospital for past 17 years and additionally since 2012 have been working as a Social worker/Disability Carer Advocate -in the Metro Regional Intellectual Disability Network (MRID.net) alongside Dr Robert Leitner’s team - hence my connection with the Angelman clinic in Kogarah. The work there is around advocacy and support for people in metro & regional areas with an intellectual disability and their carers. I became involved with the Angelman Association in 1999 and have held various roles (such as past president from 2003-2007 & 2008-2010, NSW VP 2007-2008 and 2011 until now). I have held other roles on various community committees- more recently P&C President for Caroline Chisholm Special School from 2005-2015 and Parent /community rep on School Council Committee for past 11 years and current. I helped to organise the ASA Conference in 2003 in Sydney and the 2013 one in Coogee as well as several seminars for AS families. I was awarded NSW Carer of the year in 2014.

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Cindy Byrne (Committee Member)
My husband Troy and I have two children, Brayden who is 5 and Addison who is 3.5 y.o. Addy was formally diagnosed in January this year with AS (UBE3A mutation). We live on the Central Coast of NSW. I am an Organisational Change Manager with Bankwest. I have worked with the bank for 9 years. The last 5 years have been in change management and the rest of my time has been in operations and sales. I am excited to be a part of the committee, I don't have any committee experience, but hopefully I can utilise my Change Management skills to help us achieve some of our goals.

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Michaela Townsend (Committee Member)
My husband Keith and I have three children Jake 7yrs del+ William 5yrs, Zoe 3yrs. I am have just gone back to working this year and work part time now that Jake is at school and my other two children are at kindy a couple of days a week. I am currently working at a medical receptionist, very new to me as my background is hospitality but my cafe was no longer a fit for our family. I am very keen to bring the AS community together. I have started this by organising an annual Mum’s weekend away. Next year it is Coogee and it will be the 3rd. I am currently also on the fundraising committee for FAST and like Cindy, I have not had any experience on committees, but I am learning.

First Point of Contact​

Contact your State Representative here

If for some reason you are unable to get through, contact our National President or National Vice President here

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Our Mission

The ASAA was established to support, inform, educate, network, promote research and to advocate for families affected by Angelman syndrome - read more


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PROUDLY COLLABORATING WITH FAST AUSTRALIA 

FAST Australia
The Foundation for Angelman Syndrome Therapeutics Australia (FAST Australia) is an organisation of families and professionals dedicated to funding research to provide treatments that will improve the symptoms of Angelman syndrome and ultimately that will provide a cure (see website).