What is the Marfan Australia Foundation?

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Marfan Foundation Australia is a charitable trust registered with the Australian Taxation Office (ABN 69 135 130 291)  for the purposes of receiving tax deductible donations.

Mission

Marfan Foundation Australia (MFA) was established to reduce deaths and improve quality of life for people and their families living with Marfan syndrome and related aneurysm and connective tissue disorders particularly in Australia. It joins the work of other Marfan Foundations around the world.

The goals of the Foundation are to:

  1. Advance medical knowledge of Marfan syndrome and related disorders and to translate new knowledge into beneficial clinical outcomes

  2. Promote public awareness of Marfan syndrome and to provide education to health care workers regarding the adverse outcomes of Marfan syndrome and aneurysm in particular

  3. Engage with those who have Marfan syndrome and their families and health personnel so as to provide quality support

Background to Marfan Foundation

With increasing understanding of the natural history of Marfan syndrome, the development of clinical criteria for the diagnosis of Marfan syndrome, scientific discoveries including a the finding of a mutation in the fibrillin 1 gene as the cause of Marfan syndrome specialist clinics for the diagnosis and management of Marfan syndrome were established in all Australian states during the 1990s. At the same time Associations for support of those with Marfan syndrome were set up across Australia.

In 2007 Ms Trish Carey contacted the Marfan Clinic in Brisbane as a consequence of her daughter Lisa’s unexpected and premature death from aortic dissection at the age of 28. As a result of discussions with Trish Carey a decision was made to form an Australia-wide Foundation to promote the cause of Marfan syndrome and related conditions and raise funds to increase research and awareness of MFS in Australia. Trish Carey arranged a promotional walk between Adelaide and Canberra over the summer of 2007-8. This was very successful in bringing awareness of MFS to regional communities.

With a grant from the Pratt Family Foundation to provide legal costs Marfan Foundation Australia formally came into being in January 2009 as a charitable fundraising organisation.