CONNECT-FX trial open to 29 November 2019
The CONNECT-FX study is running in Australia, New Zealand and the US, to study an investigational drug in gel form called Zygel, manufactured by Zynerba Pharmaceuticals.
News
Trivia Night fundraiser at Manly Golf Club Sydney, 28th August
Fundraising! Raffle, prizes and amazing holiday prize on offer: 5-night holiday for 2 at the exclusive and extraordinary Orpheus Island Lodge, a package valued at $11,500! Book tickets online!
Lighting up for Fragile X in July
July is Fragile X Awareness Month. A highlight this year has been the annual "lightupforfx" campaign, with 14 landmarks across Australia lighting up ORANGE for Fragile X on 22 July!
Survey on costs to families of raising and caring for children and adults with Fragile X syndrome
“The national FreeFX study, led by Associate Professor David Godler at the Murdoch Children’s Research Institute in Melbourne, aims to test a number of new highly accurate laboratory methods which can tell us about a person’s level of the FMR1 gene activity.
Fragile XPA Launch Fundraiser at 7th Day Brewery
On 4th July the 7th Day Brewery in Brookvale, Sydney, hosted a fundraiser for Fragile X Association, initiated by Vanessa and Cam from LindsioEvents. It was a fabulous night with a raffle, music provided by performers from Tuned In Music Therapy from Brookvale.
Fragile X: Entry in Focus on Ability Short Film Festival 2019
Fragile X is a 5-minute film which celebrates diversity, ability and achievement. You’ll meet primary school-aged twin brothers Zak & Ben, Tom, a teenager who loves music and art, and Zach, a young adult with a talent for business ideas.
FX Info newsletter June 2019
Family stories, the latest on drug trials for Fragile X syndrome, Australian research studies seeking participants, Fragile X awareness month in July, fundraising, events, and more!
End of Financial Year donations to help us support the Fragile X community
YOUR DONATION will help give us the capacity to continue providing support to the Fragile X community and effectively raising awareness of Fragile X-associated disorders.
Latest FX newsletter: March 2019
Our March 2019 newsletter includes: * Preview of our 30th birthday celebrations! *Tips for “back at school” resources for teachers who have children with Fragile X in their classroom
10 Things Teachers Need to Know about Fragile X
These ten things will help bring out the strengths of each child and minimize or improve some of their struggles they may encounter.
Bridge to Beach fundraiser: donations matched by Shaw and Partners
he annual Bridge to Beach paddle race from Sydney Harbour Bridge to Manly supports Fragile X Association of Australia. This year Shaw and Partners will help us reach our fundraising target of $10,000!
New Board 2018-2019
Following the Annual General Meeting of 11 November 2018, we welcome the new Board for 2018-2019 and in particular welcome two new volunteer directors, Kate McKeand and Wayne Pointon.