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Cystic Fibrosis in Australia

Australian Cystic Fibrosis Research Trust

THE TRUST:

Australian research scientists have made significant contributions to the search for control to Cystic Fibrosis (CF). It is essential to raise funds to maximise their efforts to increase their knowledge of the cause and secondary effects of the disease. This requires intensive and expensive research.

The Australian Cystic Fibrosis Research Trust (ACFRT) seeks to allocate funds for high quality research at a national level. The Trust will only support research that has been assessed and recommended by the scientific community.

Recognised institutions must supervise all research. The Trust's scientific research advisory panel also asks for papers to be presented in both scientific and lay terminology at the conclusion of each project.

WHAT THE TRUST DOES

The purpose of the trust is to secure public and corporate support for Australian research and allocate funds for high quality research at a national level.   Trustees are drawn from all states and a coordinator is appointed annually to make sure all procedures are carried out correctly

The trust will only support research that has been assessed and recommended by the scientific community and recognized institutions must supervise all research.  The Trust’s scientific research advisory panel also asks for papers to be presented in both scientific and lay terminology at the conclusion of each project.

HOW THE TRUST OPERATES

The trust has its own highly respected Research Advisory Committee and panel of more than 60 assessors from a board range of areas within Australia and overseas.  The committee has three permanent members and two chosen each year from the CFA Medical Advisory Panel who have not submitted research applications for that year.  All members of the committee are medical and/or scientific experts.

In May each year, the Trust calls for applications for research grants for projects relating to Cystic Fibrosis, its cause, treatment and attendant social issues.  Applications are reviewed by the committee and three assessors allocated to each project.  Their final assessments are then re-submitted to the Committee, which then makes its recommendations to the trustees as to which projects should be funded.

Australian medical researchers are acknowledged as being among the best in the world.  With recent advances in gene therapy, there is a real opportunity for Australia to lead the world in finding a way to control CF, however, researchers are hampered by the lack of significant funding.  CFA’s ability to provide money to the Trust for research projects depends totally on the generosity of the business community and general public.

Tax deductible donations can be made to the CF Research Trust by phoning the Chief Executive Officer of Cystic Fibrosis Australia on (02) 9878 5250 or writing to PO Box 254 North Ryde NSW 1670.

Since 1998 the Australian Cystic Fibrosis Research Trust has provided close to $2,000,000 in research funding to researchers around Australia. A detailed list of projects funded during this period is available.

The Australian Cystic Fibrosis Research Trust is endorsed by the Australian Taxation Office as a deductible gift recipient - ABN 90 202 760 228. All donations over $2 are tax deductible.  Tax deductible donations can be made to ACFRT by phoning the Chief Executive Officer of CFA on (02) 9878 5250 or writing to PO Box 254, North Ryde NSW 1670.

Trustees:

Mr Mitch Messer from Western Australia

Mr Conrad Guerra from South Australia

Mr Steve McCarthy from New South Wales

Mr Justin Dixon from Queensland

Dr Paul Dalby from South Australia

Prior to 1989, research into CF was financed almost entirely by individual State CF Associations.  State Associations’ first priority is the provision of services to their clients, funding for research generally came from whatever was left over.

The lack of a co-coordinating body meant there were no measurable criteria for selection of research projects or generation of the funds required for high quality research at a national level.  Many doctors and/or hospitals still independently seek funds from the community for research putting prospective donors in the position of trying to judge the merit of projects, which have not been assessed by the researchers’ peers.

As research into Cystic Fibrosis was conducted throughout the world and demand for information increased, it became apparent to a group of parents of children who had CF and the doctors involved in their treatment that a national body would be the most efficient way to provide the resources to support Australian research.

In 1989 this group founded and launched the Australian Cystic Fibrosis Research Trust.  From humble and difficult beginnings, the Trust has become the foremost and only Australian CF body, which consults the scientific community to assess and recommend projects.  This is recognized as the world’s best practice method of handling research project submissions.

CFA and ACFRT gratefully acknowledge the support of L.J. Hooker Franchises across Australia for CF Research.

 

 

 

 

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Kalan

We rely on donations to further research into CF and to provide services for children like Kalan living with CF.  Help people live with Cystic Fibrosis by making a contribution today.

 

 65 Roses

 

 

65 Roses Day is the national awareness and fundraising day for Cystic Fibrosis in Australia and falls on Friday 28 May 2010. To find out how you can be involved ..... more info.