Fragile X Association of Australia

35 Years Strong | Supporting | Sharing | Connecting | Informing

Understanding Fragile X

Fragile X syndrome is an inherited genetic condition that causes intellectual disability, and behavioural and learning challenges.

Fragile X Associated Conditions

Fragile X-associated Conditions are inherited conditions caused by alterations (expansions) in the FMR1 gene on the X chromosome.

Who Are We?

Fragile X Association of Australia is a member-based organisation and registered charity providing support to people living with Fragile X and their families and carers.

Fragile X Research Roundup | Recording online

On 9 July our Research Roundup featured special guests talking about how research & development efforts are building knowledge of Fragile X-conditions and potential future treatments. KATIE CLAPP, Co-Founder FRAXA Research Foundation, shared a perspective on early stage research & clinical trials in Fragile X syndrome. DR DAVID HESSL from UC Davis MIND Institute shared an update on the International Fragile X Premutation Registry - a resource to advance knowledge about the Fragile X premutation. A/PROF JESSICA KLUSEK from University of South Carolina talked about what is being learned about the FMR1 premutation in women through research work at the University. A/PROF ERIN TURBITT from UTS Sydney gave an update on the NurtureNextGen project, which involves co-design of a digital tool to improve the diagnosis experience of parents and caregivers of children with genetic neurodevelopmental conditions, including Fragile X syndrome.

Share your thoughts and help us plan for the future

Please share your thoughts! ✴️ Are the services we offer important to our community ? ✴️ What do you think is working well / what's helpful to you? ✴️ What could we improve on? ✴️ What should be our key areas of focus into the future? We have a short survey (about 5 minutes) - but with room to give more feedback if you’d like to. If you'd prefer a PAPER version, or prefer to give your feedback over the PHONE, please get in touch: 1300 394 636 Your feedback is so important to us and will help us plan for our future 🙏

Iconic paddle across Sydney Harbour!

Last Sunday saw the 26th running of Australia’s premier open-water paddling event on Sydney Harbour, proudly presented by long-term naming sponsor, Manly Wharf and Shaw and Partners Financial Services. This iconic 11km race begins at Blues Point Reserve, offering a stunning sunrise over Sydney Harbour before paddlers set off under the Harbour Bridge, passing landmarks like the Opera House, Taronga Zoo, and North Head, finishing at the picturesque Manly Wharf. More than just a race, the event proudly has supported Fragile X Association of Australia since 2014, raising funds for our Fragile X counsellor, who supports people affected by Fragile X Australia wide. The race was another fantastic event - a sunny warm day with great conditions on the water. Congratulations to the paddlers! and many thanks for supporting Fragile X.

Catchup online | Video and Audio

Our webinar presenter Bev explained what Sensory Processing is and talked about the sensory sensitivities which are commonly experienced by people with Fragile X syndrome. Bev talked about how a "sensory diet" of activities that are proactive or responsive can help a person remain calm and regulated. She provided practical strategies for supporting someone who has sensory sensitivities and Fragile X syndrome. Bev Kadish is an occupational therapist who has extensive experience in supporting children with Fragile X syndrome and sensory sensitivities, Catchup on your channels - Youtube, Spotify and Apple Podcasts, and here on our website.

Enrol in the International Fragile X Premutation Registry

The International Fragile X Premutation Registry was created to facilitate and encourage Fragile X Premutation research, including future medication and non-medication treatment and intervention studies that could positively impact the quality of life of people who are premutation carriers for Fragile X. Enrolment is open to people who are 18 years and over who are Fragile X premutation carriers. The Registry was created in partnership with an international advisory committee of dedicated Fragile X professionals from some of the world’s most respected institutions and patient advocacy organizations, including Fragile X Association of Australia

Resources for educators

Understanding the Fragile X learning style and making appropriate accommodations to support that style is the key to successful learning outcomes for students with Fragile X syndrome. How can you structure a learning environment to account for the challenges AND capitalise on the strengths associated with Fragile X syndrome? Strategies for success will include: Predictability and routine, Choices, Structured tasks, Calming strategies, Managing transitions, Time for sensory diets and movement, Accommodating sensory sensitivities , Strong and consistent use of visual aids, and more.

Our podcasts + videos + webinars

Like to know more about Fragile X? Or do a refresh? Check out our knowledge bank on YOUTUBE, SPOTIFY or APPLE PODCASTS. Featuring Australian and international specialists in Fragile X syndrome, such as Dr Marcia Braden (psychologist), Dr Jonathan Cohen (Fragile X Alliance Clinic), Dr Jennifer Epstein (psychologist), Bev Kadish (occupational therapist), Bev Sher (speech pathologist), Dr Helen (Honey) Heussler (developmental paediatrician).

Support Fragile X Association of Australia

Your generous donation will help FXAA ensure people living with Fragile X are connected, included, understood and empowered. Specifically, your donation will help us maintain and deliver support and connections to the Fragile X community around Australia: 1. Counselling support 2. FXAA Helpline - available 5 days per week - 1300 394 636 3. Webinar program 4. Peer connection and referrals 5. Advocacy work – for example, our Fragile X Care | Adults & Ageing research study. This is the first Australian study on the support needs, health & wellbeing of adults with Fragile X syndrome as they age. All support is sincerely appreciated and helps us make a difference for the Fragile X community.

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35 Years Strong | Supporting | Sharing | Connecting | Informing

Understanding Fragile X

Fragile X Associated Conditions