How can you help?

The aim of The Fragile X Association of Australia is to help children and adults with Fragile X syndrome to realise their full potential. We provide information and support to those people whose lives have been affected by the syndrome and also promote acceptance and integration of people with Fragile X within the community and help raise public awareness.

Donations are gratefully accepted to help the association meet its objectives. We have a backlog of projects that we would like to launch in order to expand the quality and coverage of support for those affected by Fragile X Syndrome. Mobilising the Specialist clinic to regional areas throughout Australia is just one project that requires the support of donations.

What your contributions have helped us achieve:

Donations and fundraising has played an enormous role in the achievement of our goals. It was through our early major fundraising dinners that we were able to start the Fragile X children’s clinics in 2002 and this was supported by the commencement of the adult clinics in 2003. The families of people who have attended these clinics, which are staffed by the top professionals in the field, have found them extremely helpful. The considerable cost is born by the Association.

These clinics have been running continuously since this time and we now are expanding these clinics to include mobile workshops which will go to rural and interstate regions where there is no access to these services. Also we have arranged for our members to attend the Fragile X Alliance clinics in Melbourne and the QCIDD clinics for adults in Brisbane. All of this is free to our members who hold a medicare card.

Another project was the creation, publication and distribution of the Fragile X Syndrome booklet. We had 70,000 of these booklets printed and it was distributed to a wide array of medical and allied health professionals, educators and institutions. We know that at least one of our members had a child diagnosed because her paeditrician had just received on of these booklets and he thought to test for Fragile X. The newest version of the booklet Fragile What? is now also available for download in PDF format.

The Fragile X Association has also held Fragile X conferences and workshops to build awareness and knowledge of Fragile X in the medical, therapeutic and general communities. As the USA is the source of most of the research into Fragile X we have invited well respected practitioners such as Dr Randi Hagerman and Dr Marcia Braden to be part of the conferences. All of this involves much planning and organisation from our energetic volunteers and we intend to hold another conference/workshop in the near future.

As an organisation, the Fragile X Association supports research into Fragile X Syndrome and, as such, has funded research within Australia. Recently we have supported work associated with the development of a heel prick test for Fragile X. Please see our June 2008 fx info newsletter for more detail on this and other Australian research projects. These are just a few of the major projects that the Fragile X Association of Australia has undertaken to support our members. Apart from these major projects we also have a telephone support service for families where volunteers provide support to other Fragile X families and of course our quarterly newsletters. Our national office is also now open 3 days a week.

We intend to build on these projects in the future and need all the financial support that we can get to ensure that we can continue to maintain the services that we provide. The association would be grateful for any assistance you can give with these and future projects.

The Fragile X Association of Australia has been granted authorisation to fundraise by the NSW State Government – CFN 10563, the South Australian Government – CCP1380 and the Queensland State Government – CH1758. In 2002 the Association was granted benevolent status making all donations over $2.00 tax deductible.

Donations:

Donations are gratefully accepted to help the association meet its objectives. We have a backlog of projects that we would like to launch in order to expand the quality and coverage of support for those affected by Fragile X Syndrome. Mobilising the Specialist clinic to regional areas throughout Australia is just one project that requires the support of donations.

You can donate through the Fragile X Association of Australia Everyday Hero page or via our Donation Form

Fundraising:

The Fragile X Association of Australia would be delighted if you held a fundraiser for us as this not only provides much needed funds but also increases awareness of Fragile X syndrome. To do so you need to register your fundraiser with the Association. To register your event download the registration form. To create your own fundraising page click visit our Everyday Hero page

Ideas for fundraising:

• sausage sizzles
• card days
• sponsored walks
• free clothes days
• garage sales

Fragile X Awareness Day: