Retina Australia was established in October 1983 as the Australian Retinitis Pigmentosa Association by a group of volunteers who were personally affected by retinitis pigmentosa. These volunteers had, during the previous five years, helped establish Retinitis Pigmentosa support organisations in the Australian states of Western Australia, South Australia, Victoria and New South Wales. The first Board members travelled at their own expense to attend the inaugural meeting of the organisation in Adelaide, South Australia, on the lawn in the front garden of a private home.
Some thirty-odd years later, Retina Australia has expanded to include the remaining states and territories of Queensland, Tasmania, Australian Capital Territory, and the Northern Territory. Board members still pay their own expenses, and minimal expenditure is used for meetings or conferences.
The impetus for the formation of a national organisation was driven by a member who had returned from the International Retinitis Pigmentosa Association Congress which was held in Baltimore, USA in 1982. He was full of enthusiasm and determined to find ways to instigate Australian research and find treatments or a cure for eye conditions that were then considered “too hard” to investigate. He was also interested in learning more about inherited retinal conditions so that he could share this information with other affected people.
Initially, Retina Australia modelled itself on the USA organisation, established in 1971 as a self-help group that would fundraise, or lobby to obtain funds, so as to promote research. However the members of Retina Australia soon realised the importance of sharing information about how to cope and carry on a relatively normal life. Retina Australia recognized the importance of holding meetings, or information sessions, where guest speakers would provide information about research, or how an individual’s lifestyle could be improved with aids or equipment.
Consequently Retina Australia, and its member organisations, have established as their priorities:
support for Australians affected by inherited retinal disease,
the provision of information about inherited retinal disease, and
fundraising for research into inherited retinal diseases.
Retina Australia also conducts a Congress every three years, alternating between the major cities in Australia’s six states and two territories. These Congresses provide the opportunity for members to meet and hear from Australian and international researchers about their own funded research and the latest research developments in Australia and throughout the world. Retina Australia also hosted the 5th Retina International Congress in Melbourne in 1988.
Retina Australia and its state/territory member organisations have always been managed by volunteer boards with minimal paid assistance. Each provides significant support for affected individuals and their families and friends in their respective regions. We also establish strategies to capture the newly diagnosed including a close liaison with optometrists,
ophthalmologists and blindness agencies. Information is provided through websites, brochures and regular newsletters and each year Retina Australia pools funds raised by member organisations to support Australian research.
Fundraising strategies over the years have improved and developed with changes in the charitable environment and we continue to look at new ways to raise money. Although Retina Australia, through its affiliated organisations continues to raise money from community based auctions and street stalls, fundraising has also expanded to include the use of workplace giving schemes, individualised donor letters and the use of media such as Facebook and Twitter. Bequests are also encouraged.
Since its inception, Retina Australia and its member organisations have provided more than $A5 million for Australian research into inherited retinal disease. This money has been used strategically to provide “seed” funding for researchers who have then been able to use their results to apply for government, or private funding, to continue their research. Over the years the funded research areas have included gene therapy, stem cell therapy, artificial prostheses as well as the psychological or sociological aspects of living with an inherited retinal disease. Individual members have also personally contributed to Australian research through personal interviews and participating in non-invasive testing.
Retina Australia is particularly proud to have provided a grant of $A40,000 in 2001 for two trained engineers, to develop the initial prototype for a prosthesis now recognized as the Australian Bionic Eye. These researchers are currently involved in refining and advancing their work through funding provided by the Australian Government.
Retina Australia has also made the Australian Inherited Retinal Disease Registry and DNA Bank a funding priority. This data bank commenced as the Western Australian family-testing program in 1984 and has since been amalgamated with a New South Wales collection of pedigrees established in 1975, and other established retinal disease data banks. This registry is regarded as paramount in the work being done to improve the treatment of, or find a cure for, inherited retinal disease.
In essence, Retina Australia is an organisation managed by volunteers, most of whom are directly affected by an inherited retinal disease, and who are single-minded in their determination to ensure that everything within their power is done to benefit all Australians who are similarly affected.