President's Report & Annual Accounts 2003

Annual General Meeting 2003

Motions passed
To adopt the minutes of the 2002 Annual General Meeting
To adopt the president’s report
To adopt the treasurer’s report and the Keratoconus Australia financial statements for the year ending June 2003

President‘s Report
Larry Kornhauser

Good evening everybody. I would like to welcome you all to the Association‘s third Annual General Meeting for the year 2002-03.

On behalf of the Association management committee, I would like to present an overview of the Association‘s activities over the past 12 months - our achievements, our successes, our disappointments and areas where more work is required.

The previous year was largely dominated by the effort put into ensuring that the Association was operating under the correct legal and tax regime, and a complete overhaul of the rules.

With that behind us, the Association turned its full attention to fulfilling its primary objectives

of preventing and controlling the impact of keratoconus

1. by raising community and eye-carer awareness of its effects on patients,

2. promoting research into keratoconus,

3. providing support for those with keratoconus and

4. acting as an advocacy group on their behalf.

Action was taken by the committee in all of these areas over the past 12 months. I believe that I can report to you that the Association‘s reputation as a serious and effective representative of those with keratoconus has been enhanced significantly within the community as a result of this work.

Membership grew dramatically in the past 12 months, especially in NSW. We now have 335 full members around Australia - an increase of 50% over the 223 members reported at the previous AGM. Over half or 182 are located in Victoria, 61 in NSW (compared to 22 a year ago), 37 in Queensland, 21 in South Australia, 20 In West Australia, 5 in the Northern Territory, and 4 in Tasmania and the ACT.

So what have we been doing?

The Association‘s principal work in the past 12 months remained centered around providing support for people with keratoconus and their families. Over 100 requests for support of different kinds were fielded by the Association over that period.

A large proportion of these were from people seeking eye-carers experienced in handling keratoconus, especially optometrists who could provide them with better contact lenses. We have raised the issue of eye-carer referral lists many times in the past and it clearly remains a priority for both Keratoconus Australia and its members.

The Association has been forced to fill the gap left by the professional eye-carer associations in this area by doing what we can to direct patients to experienced eye-carers around Australia. We thank a number of optometrists and ophthalmologists working in the area of keratoconus for their invaluable assistance in this endeavor.

But we would like greater feedback from the patients themselves about their eye-carers so we can be sure that these professionals are providing the quality of care our members expect and deserve.

Unfortunately many of the other calls for assistance we have received indicate that this is not always the case. Those of you who have attended our recent seminars would have heard some of the Patients‘ Stories, which highlight the problems that some people endure after diagnosis simply because of inadequate treatment by eye-carers, and/or their lack of experience with keratoconus. Many of the thank-you letters we receive highlight the fact that often patients can resolve their immediate problems simply by switching eye-carers.

The Association‘s primary point of contact with those seeking assistance remains its website. The site has been accessed almost 2000 times in the past year and hits are now running at close to 150 a month. We have steadily been adding new information and links to the site.

A disappointing aspect however is that our statistics show only around 15% of visitors are returning to the site. This reflects a problem already identified by the committee - the static layout of the site makes it difficult to update regularly with news and other items of interest for visitors. We have already launched a project to expand and upgrade the site to make it easier to add and access information. We expect this to be completed early in 2004. Hopefully a more dynamic website will create greater interaction between the Association and its members and other users.

Our Demystifying Keratoconus seminars remain popular. These are a key element in our attempt to inform members about the latest developments in keratoconus treatments and to increase community awareness of this eye disease.

Tonight‘s seminar on contact lenses will be the fourth held in the past 12 months.

The committee completed an interim report on the state of rebates from private health insurers for keratoconus patients. That report is available on the Association‘s website. The Association intends to continue pressing for higher benefits on contact lenses in 2004 and has secured the backing of some influential optometrists to engage the health funds over this issue.

As part of its support work, the committee has started collecting more information on federal and state government financial assistance available for keratoconus patients. This will be published on the website and sent by email to members over coming months.

As foreshadowed at the last AGM, a members survey was conducted in early 2003 and the results are now being analyzed. All new members are receiving a survey to fill out as part of the membership kit. The committee will use the outcome of this work to refocus its activities to ensure we continue to meet our members‘ needs.

The Association was able to raise its profile in the past year in a number of ways. I was invited to participate in Dr FeelgoodÔs health program in November 2002 on national radio and Belinda also discussed the Association‘s work on local Melbourne radio. Keratoconus Australia was also featured in Melbourne lawyer FreehillsÔ Pro Bono report for 2002.

We have continued to develop our links with international groups and in particular the US Keratoconus Foundation. They are providing us with their booklets on keratoconus and more recently we obtained their excellent publication on corneal transplants. This is now available for members at a nominal cost.

In the area of research, the Association was approached by two Sydney optometrists interested in studying the link between eye rubbing and keratoconus. Despite our support for the research project, we failed to agree on terms of participation after Keratoconus Australia was asked to pay all costs associated with organizing and sending a questionnaire to our members.

Perhaps the biggest disappointment for us this year related to our brochure for keratoconus patients. Although completed, the committee decided to shelve the project for the moment until we can find sufficient assistance to handle the extra work that would be generated by the widespread distribution of such a brochure. In short, we need more volunteers to help us cope with our increasing workload. In that regard, the committee is currently contacting those members who have expressed a desire to assist in the hope that more willing minds and hands can be found.

Finally, there are a number of changes in the composition of the Association‘s management committee. Our Treasurer Elena Rullo is retiring from that position and the committee at this meeting. Unfortunately she was not able to be present tonight. But on behalf of the Association, I would like to extend our heartfelt thanks to her for maintaining our finances and working so hard over the years to keep the Association on track. Elena was a founding member of the committee and should be congratulated for always finding both the time and energy to assist and contribute in all sorts of ways when others were unable to. Once again, thank you Elena and I hope you will continue to work with us in the future whenever you can.

Also retiring is our secretary Robyn Gillis. We all owe a great debt to Robyn, as she was the person who originally did a ring-around to a group of keratoconus patients to see if we could start a support group. Keratoconus Australia grew out of the meeting she subsequently organized in a suburban cafŽ. Our first committee meetings were held at her place and she was the one who coerced me into the position of president. Although Robyn has become a rare sight around Keratoconus Australia since changing jobs, she tries her best and we greatly appreciate her ongoing support for our work. The committee would welcome her back if ever she finds the time again.

The Association would also like to thank the College of Optometry for its support during the year and for kindly allowing us to use its facilities to hold our seminars and meetings. Special thanks also to the optometrists and ophthalmologists who support our work and assist us by providing technical answers to the many issues raised by members. Finally, many thanks to our hard-working committee for their efforts during the year and in particular to Belinda for allowing us to hold our meetings at her place.

Before concluding, I would like to announce the association‘s new officeholders. As only one nomination for each position was received by October 16, 2003, the following persons were elected unopposed.

Secretary - Belinda Cerritelli

Treasurer - Elizabeth Bray - although Liz is taking the position on an interim basis until a replacement can be found.

Vice President - Matt Vaughan

President - Larry Kornhauser

Treasurer‘s REPORT

Keratoconus Australia is a not-for-profit charitable association and relies on donations and the support of its members and the wider community.

In the financial year ended 30 June 2003, KA received funding from several sources

1. The kind donations from members and families of KA totaled $ 6,653.00

2. Total funds collected from our members attendance at our regular seminars totaled $ 509.00

3. Total funds from the raffles run at the seminars, $ 130

4. All our Seminars are taped, and the videos are available for sale, total funds raised from the sale of these videos $ 171

5. And finally KA is registered under the new tax system, and as a charity is able to claim back all the Goods and Services Tax paid. In the financial year ended 30 June KA received a refund from the ATO to the value of $ 371.

How did the committee spend the KA Funds

Before KA money can be spent, it must be agreed by the committee that the expenditure is both necessary, and in the best interest of the Association. The costs incurred by KA were for the administration of the Association, the website and in the running of the Demystifying Keratoconus seminars

There have been 2 main areas of expenditure in the 2003 financial year

1. One of the main outlays for the 2003 year was the cost of video taping our seminars, to the value of $ 1091

As mentioned earlier these videos form part of the KA resource library that are then on-sold

2.   The second largest expense incurred by KA was that of running the information seminars and mail outs

Postage, labels, $        539
Photocopying     $        240
Printing               $       212
Stationary           $         99
                            $    1090

The secondary expenses incurred by KA

The hosting and maintenance of the website is at a cost of $ 389 pa

Telephone $ 88

Subscriptions to relevant publications $ 110

Finally, it was voted upon by the committee that in the absence of any major funding requirements for specific projects in the short term, the excess funds held in the DGF Account were to be invested.

And so you will note the $5000 we have placed on term deposit for 3 months. I therefore present these accounts as a true and correct position of the association at 30 June 2003

Elena Rullo
Treasurer
Keratoconus Australia Inc

ABN 80 683 325 208