Angelman Syndrome Association Australia

22/10/2026

Following on from our post yesterday honouring Fiona’s incredible six years of leadership, the ASAA Committee is thrilled to formally introduce our new President, Chrissy Cimino!

Chrissy is a proud mum of three, with her eldest son, Elliott, living with Angelman syndrome. She first joined the ASAA committee back in 2020, serving as our Victorian State Representative and Social Media Officer, so many of you will already know her warm, welcoming face from local catch-ups, national events, and our online channels.

Beyond her dedicated work with ASAA, Chrissy is a Registered Nurse working in a busy Emergency Department. She brings a wealth of hands-on knowledge in navigating complex care and advocating within the healthcare system, skills that are invaluable to our community.

Chrissy is deeply passionate about building a strong, inclusive, and connected network for every single family across Australia. Whether it’s fostering peer support, coordinating state gatherings, driving national advocacy, or preparing for our major events on the horizon, Chrissy is committed to building upon the strong legacy set by all our previous Presidents and committee members.

Please join us in giving Chrissy a huge, warm welcome as she steps into this new leadership role!

21/10/2026

Yesterday at our 2026 AGM, our President, Fiona Lawton, stepped down after six incredible years in the role, and many more serving on the Executive Committee and within the association.

Fiona, your dedication, passion, and tireless advocacy have made a profound impact on our organisation and the entire Australian Angelman community. You have helped put Angelman syndrome on the map in Australia, raised crucial awareness, and ensured the voices of our families are always heard.

Leading a volunteer organisation takes an immense amount of time, energy, and heart. Balancing that alongside your work commitments and caring for Connor, we are deeply grateful for everything you have poured into ASAA during your time as President.

As the image says: "Navigation takes a compass." We will always be grateful for your vision, drive, mentorship, and unwavering determination to make everyone listen to and learn about our rare community. You have built a movement that will continue for generations to come.

On behalf of the Committee and the wider ASAA community, thank you, Fiona, for your leadership, commitment, and lasting legacy. We wish you every success in your next chapter and hope you know just how deeply appreciated you are.

Please join us in the comments below in thanking Fiona and sharing your favorite memories or messages of gratitude.

20/10/2026

Some conversations aren't easy, but they are important, including for Angelman syndrome.

Wednesday 21 October is SUDEP Action Day.

Epilepsy Queensland is creating a safe and supportive space for people living with epilepsy and their families to build their knowledge of epilepsy, seizure safety and ways to reduce risk, with SUDEP (Sudden Unexpected Death in Epilepsy) as an important part of the conversation.

Join neurologist and epileptologist Dr Lisa Gillinder for a practical and supportive conversation about living safely with epilepsy.

Wednesday 21 October 2026
12.30pm–1:40pm AEST (Brisbane time)
Online Free Webinar via Microsoft Teams

Register below to join live or receive the recording.

https://assets-oce.mkt.dynamics.com/b76df616-6faf-4669-8a52-16237503473d/digitalassets/standaloneforms/3a6aa2dd-1ec9-f111-aaad-6045bde4edcc?readableEventId=New_event_22010653333&utm_source=Dynamics%20365%20Customer%20Insights%20-%20Journeys&utm_medium=email&utm_term=N%2FA&utm_campaign=&utm_content=TPT%20Services%20-%20Edition%2012%20%2816.10.26%29&msdynmkt_trackingcontext=0b9bb574-0caa-4707-82d9-4842d6200300&msdynmkt_prefill=mktprf63e061fca62c4ab4bbf1a48c5d3ac5b5eoprf =2356e769-5f6a-4db1-b65f-5463b3990200&msdynmkt_prefill=mktprfef0f69bd68574a0992cc0534dc107da7eoprf

18/10/2026

🚨 OUR AGM IS TOMORROW NIGHT! DONT FORGET TO REGISTER🚨

It’s not too late to join us! The Angelman Syndrome Association Australia (ASAA) Annual General Meeting is taking place tomorrow night, Tuesday, 20 October 2026.

Whether you're a parent, carer, family member, or community supporter, we’d love to have you with us online as we reflect on the past year and look toward the future. All members welcome!

💻 Format: Virtual Event (via Zoom)

📅 Date: Tomorrow Night – Tuesday, 20 October 2026

⏰ Start Times Across Australia:
• 8:00pm AEDT (VIC, NSW, ACT, TAS)
• 7:30pm ACDT (SA)
• 7:00pm AEST (QLD)
• 6:30pm ACST (NT)
• 5:00pm AWST (WA)

👉 Register your interest here: https://bit.ly/ASAA2026AGMRegistration

(The Zoom link will be emailed to all registered participants tomorrow prior to the meeting.)

We look forward to seeing you online tomorrow evening! 💙

15/10/2026

📢 RESEARCH OPPORTUNITY: Calling families, carers and support people of young people with intellectual disability

Have you supported a young person with intellectual disability as they move from children's health services to adult health care?

The Sydney My Health Choices My Way research project is looking to hear from parents, carers, family members and legal guardians about their experiences of health care transition.

By taking part in an interview or focus group, you can help shape practical resources and improve health care transition for young people with intellectual disability.

💬 Your voice matters and can help create better pathways for future families.

Find out more: https://healthmyway.au/research/families/

14/10/2026

🌟 JOIN THE ASAA COMMITTEE – HELP SHAPE THE FUTURE OF OUR COMMUNITY! 🌟

Are you passionate about making a difference for the Australian Angelman community? The Angelman Syndrome Association Australia (ASAA) is looking for dedicated volunteers to join our Committee!

Whether you have lived experience as a parent, carer, or family member, or professional skills you'd love to lend, we would love to hear from you.

🚨 NOMINATIONS CLOSE TOMORROW: COB Thursday, 15 October 2026

Key Vacancies We are Filling:
• President
• Secretary
• State Representative (ACT)
• General Committee Members

We are looking for help across several areas including Family Support, Social Media/IT, Fundraising & Events, Advocacy, and Governance.

We match roles to your capacity and interests, and training and mentorship are provided so you're fully supported every step of the way!

👉 Ready to get involved?
1️⃣ Submit your nomination form here: https://bit.ly/ASAANominationForm
2️⃣ Ensure your FREE ASAA membership is up to date: https://bit.ly/ASAAMembership

💬 Questions? Reach out for an informal chat with National President Fiona Lawton at [email protected].

Make sure you attend our AGM on Tuesday 20th, October. Register here: https://bit.ly/ASAA2026AGMRegistration

05/10/2026

📢 2 weeks to go till our 2026 Annual General Meeting 📢

The Angelman Syndrome Association Australia (ASAA) invites our community, families, and supporters to join us for our virtual 2026 Annual General Meeting.

Whether you want to stay informed, cast a vote, or step up to help shape the future of ASAA, we would love to have you there!

📅 Date: Tuesday, 20 October 2026

💻 Format: Online via Zoom

⏰ Meeting Times Across Australia:
• 8:00pm – 9:00pm AEDT (VIC, NSW, ACT, TAS)
• 7:30pm – 8:30pm ACDT (SA)
• 7:00pm – 8:00pm AEST (QLD)
• 6:30pm – 7:30pm ACST (NT)
• 5:00pm – 6:00pm AWST (WA)

(A Zoom link will be emailed to all registered attendees on the day of the meeting.)

👉 Register today to attend: https://bit.ly/ASAA2026AGMRegistration

Join the ASAA Committee – We Need You!

Want to get more involved in supporting the Australian Angelman community? Nominations are now open for all board positions!

We are actively seeking passionate individuals for several key roles:
🔹 President
🔹 Secretary
🔹 State Representatives
🔹 General Committee Members

We are looking for skills and lived experience across Advocacy, Grant Management, Social Media/IT, Risk & Governance, Fundraising, and Family Support. We match roles to your capacity and interests, and training/mentorship is provided!

📝 Nomination Deadline: COB Thursday, 15 October 2026

👉 Submit a nomination: https://bit.ly/ASAANominationForm

❓ Have questions? Contact National President Fiona Lawton at [email protected]

Membership with ASAA for families is 100% FREE! However, you must be a registered full member (parent, sibling, or carer) to vote at the AGM or nominate someone for the Committee. We are updating our records, so please take 2 minutes to fill out our new membership form: https://bit.ly/ASAAMembership

📧 Questions? Reach out to us anytime at [email protected] or contact your state representative

03/10/2026

CALL TO ACTION: The way the NDIS considers high support needs and protected supports excludes most in our community from the Australian Government’s Support Determinations safeguards. Now is the time to contact your local MP and highlight the issues.

Read RVA’s statement below.

Rare Voices Australia (RVA) is concerned about the impacts of the latest changes to the National Disability Insurance Scheme (NDIS) on Australians living with rare disease disability. Changes to safeguards for high support needs participants came into effect from 1 October 2026. RVA understands the....

02/10/2026

Webinar Recording: Down Syndrome Australia Consortium on the biggest NDIS changes taking effect right now!

Thank you to the hundreds of people who joined us for this important discussion. Please watch, share with your support team and network, and act if you need to update information, invoicing or reports!

You might have heard that the NDIS Bill is now law or that the NDIS...

30/09/2026

DRO CONSORTIUM MEDIA RELEASE
Important changes take affect from I October 2026 and there are still details to work out, including how protections for participants with ‘high support needs’ and those accessing excluded supports will work. More to come as the implementation rolls out.

Read the full media release here -
https://buff.ly/Mho72pl