Cystic Fibrosis Australia (CFA) is a national organization comprising of member State and Territory associations. We work with member organizations to develop national education programs and to collect and distribute information about Cystic Fibrosis.
One of our objectives is to build an international network of contacts with well-known CF researchers and centers of learning. We aim to improve the ability of member organizations to provide high quality health and welfare services to children and young adults with CF and their families.
Research
Our main task here in Australia is to administer the Australian CF Research Trust. CFA is responsible for securing the funds and professional expertise needed to conduct research projects throughout Australia into the cause and eventual control of CF. 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 co-ordinator 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 all research must be supervised by recognized institutions. 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.
Data Registry
We also administer and seek funding for the National Cystic Fibrosis Data Registry. Established in 1996, the registry is a complete and thorough record of all people in Australia and New Zealand who have CF. The Data Registry is a valuable scientific aid to researchers and ultimately will help us reach the medical solutions we are all so anxious to find. The registry is updated annually and has proved to be an invaluable aid to researchers seeking specific data for research projects. The response to our requests for data is steadily improving with 80% of CF clinics now participating.
Public Awareness
Part of our overall strategy to increase public awareness of CF and the profile of CF Associations has been to develop a corporate identity. A red rose, our national symbol and logo, is the key element of our corporate identity. The logo has been steadily increasing in popularity and we have had excellent feedback from inside and outside the CF community. Our intention is to make the CF rose instantly recognizable. In the highly competitive fundraising marketplace, this is as important now in the non-profit sector as it is in the business world.
The main focus of our public awareness program is our annual CF week when we hold Red Rose Day. Red Rose Day has improved year by year and, in addition to press coverage, more than 100 radio stations across the country play Red Rose Day commercials free of charge. That represents around 4,000 free-to-air time slots.
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Photo of a promotional / support vehicle we use for various profile raising events. The car’s name is “Rosie” and she is here on a welcome home trip at the Sydney Opera House with two of her drivers: Rob Dettman (CF) on the left and Brad Lasoski (CF) on the right. Rosie is currently being converted for entry in The Great Escape
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In September this year we will launch the inaugural Great Escape for CF. This charity drive will raise money and awareness for us. Organizers expect to attract at least thirty entrants who will drive on outback roads from Dubbo in New South Wales (NSW) to Great Keppel Island in Queensland and back to Port Macquarie in NSW. Drivers and their crews will stay at outback stations in places way off the beaten track and seldom seen, even by Australians. We hope to capitalize on the Australian love of cars and dirt roads to make this into an annual event.
Every two years, we hold the Australian and New Zealand Cystic Fibrosis Conference. Our last conference on August 1, 2001 attracted a range of national and international speakers and more than 400 delegates. Conference 2003 will be held in Melbourne Victoria and we promise a warm welcome to any of your readers who would like to attend.
Terry Stewart
Chief Executive Officer
Cystic Fibrosis Australia
