Angelman Syndrome Association Australia

05/09/2026

To the dads, granddads, step dads, and father figures in our community, doing one of the toughest jobs, often the silent achiever 💙

They are the steady presence through sleepless nights and long days. They learn the ins and outs of seizure plans, AAC, mobility gear, and NDIS paperwork. They handle the physical heavy lifting, manage the practical details, and learn to read every smile, sound, and gesture to give their child a voice. They will fix something to avoid the hours of paperwork and get creative to make sure their child is included!

They carry real worries about the future, yet show up every single day with patience, humour, and strength. They know the pure joy of a breakthrough milestone, no matter how small to anyone else.

And to the dads navigating grief, facing today with an ache for the child they hold in their hearts instead of their arms, we are holding you close today.

We see the weight you carry, the quiet work you put in, and how fiercely you love your kids.

Happy Father’s Day to all our Aussie Angelman dads and father figures. We see you, and thank you 💙

03/09/2026

Celebrate the Extraordinary Men in Our Angelman Family! 💙

Father’s Day is almost here, and we want to honour the incredible dads, grandfathers, stepdads, brothers, and male role models who bring so much love, patience, and strength to our Angelman syndrome community.

Whether they’re navigating daily routines, celebrating every milestone, or being that steady anchor, they deserve to be celebrated!

Nominate a Special Male Figure to Win a Father’s Day Box!

Drop a comment below mentioning the special man in your child’s life and why he means the world to your family.

Not on socials? You can still nominate him! Just share his name anyway.

Let’s get behind the men in our community and show how much we appreciate them.

(Name drawn randomly at 9:00 PM EST).

27/08/2026

"Friendship is born at that moment when one person says to another, 'What! You too? I thought I was the only one.'" — C.S. Lewis

This quote summed up our recent Victorian young family catch-up perfectly. 💙

We loved bringing our Victorian young families together, but what made the day extra special was welcoming 7 families to their very first event.

There’s such a relief in being in a room where you don’t have to explain your child or justify your daily normal. You can just sit down, chat, and instantly feel understood by people who get it without a single explanation. Watching the new families meet each other and build those instant connections was easily the best part of the day.

In a small community like ours, peer support is everything.

We’re so proud to host the first event like this to help our families find their people.

A huge welcome to all of our new families, we’re so glad to have you with us!

If you’re a new family to our Angelman community and not yet a member (It’s FREE!): sign up here to find out about events like this: https://bit.ly/ASAAMembership

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! 💙