Fragile X

Association

of Australia

Home | Contact us at 1300 FXINFO

About Us

The Fragile X Association of Australia is a non-profit organisation made up of family, friends, therapists, doctors and carers of people with Fragile X Syndrome. The aims of the Association are to help people with Fragile X to realise their full potential, provide information and support to those people whose lives have been affected by Fragile X, promote acceptance and integration of people with Fragile X into the community and to raise public awareness of Fragile X Syndrome. 

Currently, it is funded by membership subscriptions and donations. It has been granted authorisation to fundraise by the NSW State Government- CFN 10563- and in 2002 was granted benevolent status making all donations over $2.00 tax deductible. 

Our main objectives are to promote the detection, relief, treatment and prevention of Fragile X through:

• Supporting intervention and other programs in relation to Fragile X
• Supporting research into fragile X
• Promoting awareness and education in relation to Fragile X by the holding of lectures, meetings, classes, conferences and seminars.
• Advising and lobbying government and other agencies.

The Association is run by a committee of volunteer parents and friends of people affected by Fragile X Syndrome. 

• President: John Kelleher
• Treasurer: Doug Rodgers
• Secretary: Robyn Iredale
• Committee Members:
• Rick Jones, Bruce Donald, Tim Turpin

The committee is a small group of existing members and we welcome any new member that would like to be involved and help out.  We value support from individuals who would like to contribute their expertise to the Association.

The Association has a major task in achieving its objectives. We need support from all groups in our society but most of all we need it from those directly involved with Fragile X. Your support through joining the Association is of great importance and very much appreciated.

Committee Bios:

	John Kelleher, a former Joint Managing Director of a Property Investment Company and a Chartered Surveyor, has been the President of the Association since November 2005. John and his wife Christine immigrated to Australia from England in 1997 and they have three children, two of who have fragile x.
	Doug Rodgers has been Treasurer of the Association since 1995.  He is a retired business executive.  Doug and his wife Jane, have two young adults with Fragile X – Tim who is undertaking a “Transition to Work Program” and Hugh who is in his final year at school
	Rick Jones joined the committee in 2001. He is a Business Director in the Mergers and Acquisitions Industry. Rick has been heavily involved in several community organisations such as LifeStart and the Rural Fire Service. His recent efforts on the committee have focused around the redesign and rebuilding of the Associations website and taking some of the Support hotline calls.
	Dr Robyn Iredale is a geographer and has taught in high schools and universities in Australia and Canada and worked for the NSW and Commonwealth Governments. For the last 20 years she has been conducting research into migration in the Asia Pacific region. She is a carrier of FXS and has one son who is affected and a daughter and 2 brothers who are carriers
	Tim Turpin (BA, PhD) is a Sociologist specialising in science, technology, innovation, industrial change and human resource policies. Tim started his working life as a wool classer, built mud brick houses and worked for the Victorian State Government before becoming an academic. He has extensive experience in designing, coordinating and providing expert input to research projects and workshops across a diverse range of countries in Asia, the Middle East and Africa. His client agencies include, the World Bank (Thailand); AusAID; UNESCO (Jakarta, Beijing and Cairo Offices); UNESCWA; APEC; ACIL; Governments of Indonesia, the Philippines, Korea; and various State and Commonwealth agencies in Australia. He is the stepfather of Martin Smith, a young man with FXS.
	Bruce Donald, AM, is a Sydney lawyer who joined the Committee in 2005.  He and his wife Penelope Figgis, an environmental consultant, have two daughters who are fragile X affected.  Their diagnosis led to the diagnosis of Penny's English cousin for whom the cause of his intellectual disability had never been explained. As a family that had been completely unaware of the condition, Bruce and Penny see the need for a massive effort in public awareness about fragile X.  This is Bruce's particular focus on the Committee using his contacts and background in media.