Fragile X Association of Australia

08/10/2026

Spotlight on Fragile X syndrome in the US! Congrats to The National Fragile X Foundation for raising awareness of FX with this video which will air across the United States on the Public Broadcasting Service (PBS) over the next three months!

The NFXF serves all those living with Fragile X, focusing on Advocacy, Education, Research, and Treatment with Community at the heart of everything we do.

06/10/2026

Catchup online- very informative webinar on major changes to the NDIS, and what they mean for people with intellectual disability and their caregivers. Recording and slides available online.

More than 240 people attended our webinar on Changes to the NDIS.

If you missed it, you can watch the recording on our YouTube channel: https://buff.ly/pwCMLRC

The webinar was presented by the Down Syndrome Australia Consortium for members of our community.

In the webinar, we talked about:
➤ the biggest changes to the NDIS
➤ when the changes will happen
➤ where to find support and more information.

The webinar is for people with disability, families, carers and support people.

01/10/2026

Catchup | an overview of major changes to the NDIS which impact children and adults with intellectual disability and their parents/care givers.

More than 240 people attended our webinar on Changes to the NDIS.

If you missed it, you can watch the recording on our YouTube channel: https://buff.ly/pwCMLRC

The webinar was presented by the Down Syndrome Australia Consortium for members of our community.

In the webinar, we talked about:
➤ the biggest changes to the NDIS
➤ when the changes will happen
➤ where to find support and more information.

The webinar is for people with disability, families, carers and support people.

29/09/2026

What a morning it was on Sydney Harbour! Thanks to everyone who joined us for the annual MANLY WHARF Bridge to Beach. It was fantastic to see more than 250 paddlers make their way from Blues Point to Manly in such beautiful conditions.

The funds raised by the paddlers involved in this special event help resource our Family Counsellor - a vital support for the Fragile X community. 🙏

A huge thank you to Shaw and Partners Financial Services for their continued support of the Australian Ocean Racing Series, and to the race naming sponsor Manly Wharf for backing this event year after year.

Massive thanks to Felons Brewing Co Manly for welcoming everyone after the race and hosting presentations on the deck. It was the perfect place to celebrate a great morning on the water. Wonderful to have Northern Beaches Council representative Sarah Grattan take part in the post-race medal presentations at Felons.

We’re grateful to every paddler, volunteer and supporter who helped make the day so special—and for your continued support for Fragile X Association of Australia. Shoutout to Dean Gardiner OAM for having us on board Bridge to Beach since 2014.

See you next year!

26/09/2026

Day 2, Canberra Disability Expo 🧡 Fantastic to catch up with our members and meet new FX families.

If you get here today, find Liz and Megan at SB02.

My Future, My Choice Disability Expos

25/09/2026

Fun day catching up at the Canberra Disability Expo 🧡

We're Friday & Saturday, 9am-3pm. Find us at Booth SB02.

25/09/2026

Canberra Disability Expo 🧡 Today & tomorrow at EPIC.
If you're coming to the Expo look out for us on Booth SB02 .

24/09/2026

We'll be there! If you get to the Canberra Disability Expo this week, drop by our table and say Hi to Liz, Wendy and Megan.

Always a great showcase of services and supports for people with disability in ACT.

My Future, My Choice Disability Expos

23/09/2026

🧡 Please share your thoughts! 🧡
We're keen to hear from people who are carriers for the Fragile X premutation, people with Fragile X syndrome, their families/carers, and the professionals who support you.

Our FX Community survey takes just 5-10 minutes to complete:
✴️ What do you value about our role in supporting our community ?
✴️ What do you think is working well / is helpful to you?
✴️ What could we improve?
✴️ What should be our key areas of focus into the future?

Your feedback is so important and will help set the stage for our focus into the future. The survey is open to 28th September.

Survey link => https://www.surveymonkey.com/r/3DZXVLD

19/09/2026

Yay team! Fragile X awareness in spades today, having good conversations with GPs from all over Victoria.

Lovely to meet some GPs who have patients with Fragile X syndrome in their care, and other GPs keen to learn more about the health concerns associated with the Fragile X premutation.

We profiled a range of resources that can help GPs get up to speed on reproductive carrier screening and on the Fragile X premutation, as well as a new series of genetics podcasts by Dr Alison Archibald which address practical aspects of genetic tests and screening.

Brilliant to have Mary and Lana on hand to help Wendy today - both are old hands, having done Healthed education events with us in the past. 🙏