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. 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.

Each year the Trust calls for applications for research grants for projects relating to Cystic Fibrosis, its cause, treatment and attendant social issues. 

Australian medical researchers are acknowledged as being among the best in the world.  With recent advances in CF research, 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) 8883 4477 or writing to PO 8007, Baulkham Hills  NSW  2153.

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 calling CFA on (02) 8883 4477 or writing to PO Box 8007, Baulkham Hills  NSW  2153.

Trustees 

Dr Paul Dalby from South Australia

Mr Conrad Guerra from South Australia

Mr Mitch Messer from Western Australia

Dr Patrick O'Connor from South Australia

Ms Margaret Walker from Queensland

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.