Cystic Fibrosis in Australia - Holidays For A Good Cause

About CF

Cystic Fibrosis (CF) is the most common life threatening, recessive genetic condition affecting Australian children.

Symptoms can include poor weight gain, troublesome coughs, repeated chest infections, salty sweat and abnormal stools.

Cystic Fibrosis is a genetic disease that affects a number of organs in the body (especially the lungs and pancreas) by clogging them with thick, sticky mucus.

Repeated infections and blockages can cause irreversible lung damage and death. Mucus can also cause problems in the pancreas preventing the release of enzymes needed for the digestion of food. This means that people with CF can have problems with nutrition.

CF is an inherited condition. For a child to be born with CF both parents must be genetic carriers for CF. They do not have CF themselves.

In Australia, all babies are screened at birth for CF.

At present there is no cure for CF, but the faulty gene has been identified and doctors and scientists are working to find ways of repairing or replacing it. One of the main objectives of the CFA Research Trust is to fund this work.

With today’s improved treatment most people with CF are able to lead reasonably normal and productive lives. A great amount of time is being directed towards finding new and improved ways of treating CF and of finally finding a cure.

About CFA

CFA is a national body comprising member State CF Associations. The national office is located in North Ryde New South Wales.

The national organisation assists the member organisations to achieve common objectives by developing national education programs and collecting and distributing information about Cystic Fibrosis (CF) at national and international levels. This allows member organisations to efficiently and effectively direct their activities to the provision of high quality health and welfare services to children and young adults with CF and their families.

A major task of the national office is to secure the funds and professional expertise necessary to conduct research projects throughout Australia into CF, its cause and eventual cure. The research program is conducted through the Australian Cystic Fibrosis Research Trust (ACFRT), which operates within the CFA corporate structure.

CFA also administers and seeks funding for the National Cystic Fibrosis Data Registry. Established in 1996 the registry is a complete and thorough record of all people in Australia who have CF. To maintain privacy, each person with CF is coded. The registry is updated annually and has proved to be an invaluable aid to researchers seeking specific data for research projects and clinical trials. From 2006 all data collected will be via a web base system.

CFA organizers a National CF Conference every 2 years for Health Professionals and Lay People. This is held in Capital Cities.

AIM

To facilitate and promote the provision of optimal care to all people affected by Cystic Fibrosis and ensure they have the best possible quality of life.

MISSION

CFA represents and promotes the interests of people with CF, their families and carers by:

Raising awareness and educating

Advocating and lobbying, and

Promoting CF Research in order to enhance the well being of the CF Community.

VISION

Lives unaffected by Cystic Fibrosis.

OBJECTIVES

To promote change in federal policies or laws which are prejudicial to the rights or well being of people with Cystic Fibrosis.

To be a coordinating body in the production and dissemination of national and international developments on research and matters of interest to CF organisations.

To build an international network of contacts with acclaimed Cystic Fibrosis researchers, centres of learning and kindred organisations.

To administer national research monies.

To administer national community awareness and education programs. To administer, with co-operation of the States, national fundraising efforts and programs.

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