Angelman Syndrome Association Australia

19/08/2026

The NDIS Amendment Bill has passed the Senate.
ASAA remains concerned about the potential impacts of the Bill on people with Angelman syndrome and our families.

However, several last‑minute amendments reflect the strong advocacy by ASAA, our partners in the DownSyndromeAustralia-led DRO Consortium, and Rare Voices Australia. These changes include:

✅ Clearer and more balanced definitions of parental responsibility
✅ Improvements to how unscheduled plan reassessments can be used
✅ New safeguards for people who require continuous 24/7 supports
✅ More flexibility for plan variations and review rights

We will continue working closely with Government and the NDIA to ensure these reforms are implemented safely and carefully. There is still a lot of work to do!

We know many in our community are feeling anxious about what comes next. Please know that ASAA will keep you informed as we analyse the changes and work to protect the supports our community rely on.
Can't Stop. Won't Stop!

17/08/2026

💙 Only 6 months until International Angelman Day! 💙

Mark your calendars for 15 February 2027. International Angelman Day is our chance to shine a light on Angelman syndrome and make sure our community is recognised, understood, and supported.

Awareness is central to ASAA’s work. When more people understand Angelman syndrome, our loved ones and families get better support, from early diagnosis to access to services and stronger networks around us. It also helps us find and connect with our community.

This year, more than 75 buildings and landmarks lit up blue across Australia: see the full list here https://bit.ly/2026IADLightItBlue. A huge thank you to every organisation that took part, your support helps us reach thousands of people who may not otherwise know about Angelman syndrome.

🎥 Watch our highlight video below to see some of the incredible Light It Blue moments from around the country.

Want to get involved and join the campaign for next year? It’s never too early. Email your local council and landmarks now and ask them to save the date for 15 February 2027.

If you’re unsure what to write, send us a message - we’re happy to help with wording.

Let’s build on this year’s momentum and turn Australia blue again in 2027. 💙✨

08/08/2026

We would like to wish ASAA committee member Anna, her husband Boris, and the incredible little Leo a successful city2surf in Sydney tomorrow morning! 🏃‍♂️💙

Keep a lookout for their striking blue outfits, complete with the Smile campaign t-shirts and angel wings! They are running to raise crucial awareness for Angelman Syndrome and much-needed funds for FAST Australia, with little Leo joining in for the course.

Raising awareness for Angelman Syndrome is so important as it increases understanding of this rare neuro-genetic disorder, helps secure vital funding for targeted research and clinical trials, and fosters a more inclusive and supportive community for individuals and families navigating its unique challenges.

A massive shout out to Anna, Boris, Leo, and Mia for taking on the race! Please give them a huge cheer if you see them out on the course tomorrow! 🙌✨

04/08/2026

Today we farewelled Sarah Geier, a much-loved member of our Angelman syndrome community. Sarah was 58 and passed away on 29 July, surrounded by her devoted family.

Sarah’s family shared a moving tribute today. They spoke about her wicked sense of humour, resilience, fierce hugs, and determination, and the love she gave to those around her. The many stories of her mischief and charm will live on in the hearts of everyone she touched.

“Caring for Sarah was tough, not because the work was hard, but the responsibility was enormous. But it was all worth it.

Without words, she changed us all.

Sarah, you are the reason our family learned what love can mean, and life was better because of you. We will carry your story and your love. Rest peacefully now.”

To Sarah’s siblings Judy Geier Sharp, Hartmann and George, her extended family, friends and everyone who loved her, we send our love. Sarah will be remembered for the important place she held in her family and community, and for the difference she made in the lives of everyone around her.
Rest peacefully, Sarah 🕊️💙

04/08/2026

Important webinar recording: Supporting health and wellbeing of people with intellectual disability

ASAA is grateful for the tireless work of the team at the National Centre of Excellence in Intellectual Disability Health in helping improve health outcomes for people living with intellectual disability.

Watch. Learn. Share.
https://www.youtube.com/watch?v=rA3c9e4Ptf4

This 90-minute webinar, part of the National Centre of Excellence i...

24/07/2026

**ASAA DRO Community Update – NDIS Bill Progress**

As part of the DRO Consortium, ASAA continues to advocate for safe, clear NDIS reform for people with Angelman syndrome. The NDIS Amendment Bill 2026 is still being reviewed through the Senate inquiry.

Until the Bill passes, nothing should change with your current NDIS plan or how you use it.

Some updates to the Bill were made in late June, but they did not go far enough, and the DRO Consortium is continuing to push for stronger safeguards for people with intellectual disability and complex support needs.

The DRO Consortium has made multiple submissions calling for protections around 24‑hour supports, employment supports, and people who may be affected by unclear rules or future funding decisions.

Public hearings continue through July and August, with the Senate report due 14 August.

ASAA will keep our community updated as the Bill progresses.

If you have experienced any signficant changes to your loved one's NDIS Plan in recent months, please contact ASAA - [email protected]

https://www.downsyndrome.org.au/blog/2026/07/22/ndis-bill-update/?fbclid=IwY2xjawTPsElleHRuA2FlbQIxMABicmlkETFEcExmY0NNV2ZKeXIzSEVvc3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHgRK4-bDOpyjC_TqEkEKeWRIfft-2DHLvSpGFjjd3v2OTLFtKsdDuLpLCyUX_aem_XgnbyDKRASqgyff8nl3OGw

22 July 2026 We know many people with Down syndrome, families and support people are worried about the proposed changes […]

09/07/2026

Yesterday, ASAA Secretary Annie Murphy and Boris Waldman from FAST Australia met virtually with Minister Butler to discuss Health Technology Assessment (HTA) reform—the system that decides which life-changing medicines get subsidized on the PBS.

Angelman syndrome was front and center thanks to a powerful question from Boris. He asked whether the government will look at the bigger picture, specifically, how new therapies can drastically reduce lifetime care costs.

The Minister gave a positive response, which is a huge milestone as we highlight the need for affordable, accessible future treatments.

Thank you, Rare Voices Australia, for bringing the rare disease community together for this vital discussion. And a massive thank you to Annie and Boris for showing up and shining a light on Angelman syndrome families! 💙

06/07/2026

ASAA, as part of the DSA Consortium, stands in strong solidarity with our fellow Disability Representative Organisations.

People with Angelman syndrome simply cannot afford to lose critical NDIS supports before appropriate alternatives are firmly in place.

We will continue to strongly advocate for the protections and guarantees our community needs.

🔗 Read the full joint statement here: https://buff.ly/YxhSr9m

The DSA Consortium has joined other Disability Representative Organisations in calling for no changes to the NDIS before alternative supports are in place.

We welcome the Senate Committee recognising that these supports need to be available before changes to the NDIS take effect.

At the same time, we're disappointed the Committee has recommended the Bill proceed without more substantial changes.

People with disability should not lose access to the supports they rely on before appropriate alternatives are available.

We'll continue speaking up for people with Down syndrome and intellectual disability and sharing updates as this work continues.

Read the full joint statement: https://buff.ly/YxhSr9m

30/06/2026

✨ THANK YOU FROM ASAA! ✨

As we wrap up the financial year today on June 30th, we want to send a massive thank you to everyone who has supported the Angelman Syndrome Association Australia over the past 12 months! 🙏💙

Your incredible generosity directly impacts lives by helping support the following initiatives:

• 📦 Welcome Packs or a hospital care package: Provides a warm hug and vital reassurance to families during an incredibly difficult time.
• 🌍 IAD Celebrations: Funds each state community events where families build lifelong connections and find their village.
• 🤍 Crisis Packages: Relieves financial pressure for a family facing exhausting, stressful, and prolonged hospital stays.

💻 Exciting News Ahead!
Because of your ongoing support, we are also thrilled to share that:
1. Our website revamp is currently in development!
2. Upcoming webinars are on the way! 📅 Stay tuned for sessions designed to empower our families.

⏰ Last chance for an EOFY tax deduction! There is still time to make a tax-deductible donation before midnight tonight.

🔗 https://www.givenow.com.au/angelmansyndrome

Thank you for standing with us and helping the Angelman syndrome community!

29/06/2026

*RESEARCH OPPORTUNITY*: Calling NSW Caregivers of people living with Angelman syndrome who have experience with genetic testing, genetic services and/or genetic counselling.

Our friends at Genetic Alliance Australia and SATB2 Connect are supporting researchers from the University of Sydney and The Patient Experience as they seek to identify ways to improve how people experience genetic healthcare in NSW.

🔗 Register your interest here: https://sydney.au1.qualtrics.com/jfe/form/SV_5j6w5bT5cAUlfDg

What would you change about the way genetic healthcare is delivered in NSW?

Have you or your family experienced genetic testing, genetic services, or the search for a genetic diagnosis?

Researchers from the University of Sydney, in partnership with The Patient Experience Agency and supported by Genetic Alliance Australia, are inviting people with lived experience of rare genetic conditions, and the families who support them, to help map the real-world genetic care journey across NSW.
Whether you've spent years searching for answers, waited for appointments or test results, navigated genetics services, or supported a loved one through the process, your experiences matter.

Supported by NSW Health, this project will use the insights of patients, carers and families to identify opportunities for improvement and directly inform ongoing work to strengthen the way people access and experience genetic testing, genetics services and genetic healthcare across NSW.
Because the people who use the system every day should help shape how it evolves.

📍 Online focus groups
💲 Participants reimbursed $40 per hour
📍 Open to eligible NSW participants

Your story could help improve the journey for future families.

Register your interest here:
https://sydney.au1.qualtrics.com/jfe/form/SV_5j6w5bT5cAUlfDg