Keratoconus Australia Inc is a not-for-profit association created to prevent and control the eye disease, keratoconus, and visual impairment caused by keratoconus. The Association was registered in April 2000 and is operated by volunteers. At present, it is completely self-funded from private donations. We have no government funding or corporate support other than pro bono assistance.
Full membership of the Association which confers voting rights is open only to people with keratoconus or the parents and guardians of juveniles with keratoconus. This is to ensure that the Association remains governed by the persons directly affected by keratoconus.
The committee of management is open only to full members and as such all committee members have keratoconus or are parents of children with keratoconus.
Anybody can become a supporter of the Association or can assist in the implementation of the Association's policies and programs.
The idea for a support group for people with keratoconus first came from Melbourne optometrist, Associate Professor Richard Vojlay, who believed that keratoconus patients were not receiving the quality of care they deserved and that a patient support group could offer the type of first-hand advice and assistance that eye-carers were unable to provide. Professor Vojlay asked a few of his patients if they would like to meet over coffee one evening to discuss the idea and see what could be done. Robyn Gillis was the driving force behind the formation of the group, ringing around to patients and urging them to become involved.
The initial meeting was held at the Grocery Café in Burke Rd Camberwell in late 1999. About 25 people attended. Some of us were a bit sceptical about the need for such a support group. But after listening to many of the harrowing stories recounted that night, we all left convinced it was time to change the way people with keratoconus were treated – both metaphorically and literally.
As in many small groups of well-intentioned people striving to achieve lofty goals, the early momentum was impressive. The committee meetings were well attended, the projects were never lacking and the enthusiasm was infectious. Slowly, we built the Association from the ground up. There were plenty of mistakes made. None of us had much experience in this sort of thing, all of us had full time jobs elsewhere.
Yet once a mission statement was drawn up and the Association was registered, we knew we had a structure and plan. Implementation of that plan was slower than we might have imagined back then. Many of the founding members have stepped back for various professional and personal reasons. But the desire to maintain a support group for keratoconus has not waned. Nor has the need.
The purposes of Keratoconus Australia Inc (Association) are to prevent and control the eye disease, keratoconus, and visual impairment caused by keratoconus, by, without limitation:
- raising the awareness and understanding in the medical, optometric and general community of keratoconus, its signs, symptoms and effects;
- promoting research into the causes, prevention and control of keratoconus; and
- as incidental activities, acting as a representative body on behalf of people with keratoconus and providing, where necessary, counselling, support and referrals to the people with keratoconus and their families.
Keratoconus Australia aims to achieve these objectives by:
- Assisting people to find optometrists and ophthalmologists / corneal surgeons experienced in treating keratoconus
- Helping to develop a network of support groups throughout Australia.
- Providing an outreach service to enable patients connect directly with other people with keratoconus and their families to discuss their experiences.
- Raising community awareness of keratoconus through public meetings and seminars with eye-carers specializing in the disease.
- Developing online resources to provide information about keratoconus and connect people to the keratoconus community.
- Publishing a regular electronic newsletter with information on a wide range of issues affecting people with keratoconus.
- Acting as a representative group for keratoconus patients to improve health rebates for treatments (contact lens and solutions, glasses) and corneal surgery, like corneal crosslinking.
- Supporting local research into the condition by recruiting patients for clinical research and helping fund initiatives like the Australian Keratoconus Registry project.
- Campaigning on the dangers of eye rubbing with the assistance of Save Sight Institute and Professor Charles McMonnies.
- Seeking the recognition of keratoconus as a disability.
- Assisting in the training of student optometrists to ensure an adequate supply of specialist contact lens fitters for keratoconus.
- Developing a national registry and database on Australian keratoconus patients designed to assist in networking individuals and groups within Australia, and to form a basis for future research work.
- Supporting efforts to increase organ donations and in particular to reduce waiting times for corneal grafts.
Rules of the Association
The Annual General Meeting of 2016 approved new rules formulated to comply with the Associations Incorporation Reform Act 2012 (Vic). These were prepared by Herbert Smith Freehills.
A copy of the Rules of Keratoconus Australia Inc can be downloaded in pdf format below.