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President’s Annual Report

23 October 2002

Ladies and gentleman

I’d like to start by welcoming everybody to the association’s 2nd Annual General Meeting. Tonight I will give a brief rundown on the Association’s activities in 2001-02 and our plans for the future.

At our last AGM, I outlined the real progress made by the association in its first year and our hopes and ambitions for coming 12 months. As often happens in organizations such as ours, the unpredictable is generally the only predictable outcome. And so it was for us over the past year.

This meant that some things I foreshadowed last year have not been achieved. However we have made significant progress in other areas that hopefully will secure the association’s long-term future.

Without doubt, the most significant unforeseen event was the problem we encountered in November 2001 with the Tax Office regarding our application for Deductible Gift recipient status. DGR status enables all donations to the association of $2 and over to be tax deductible.  It also has implications for obtaining funding.

After discussions with the ATO, we decided to review our structure and rules in order to meet with the requirements for DGR status. With the kind assistance of the law firm Freehills, we rewrote the association’s articles, clarified our membership policy and had the members approve the changes at a Special General Meeting held in March 2002.

In May 2002, the ATO granted us DGR status. This is a wonderful achievement that will greatly assist the association in securing funding and grants in the future, in particular from the larger charitable foundations.

Until DGR status was finalized, the ATO requested that all donated funds be frozen . This meant that for six months, the association was unable to access internal funding and significantly limited our ability to advance many projects as anticipated.. These included  a keratoconus information brochure, a mailout of the member survey, plans for an online newsletter and revamped website, and a booklet on keratoconus.

The committee of management decided that it would direct its attention to other issues while awaiting the outcome of the DGR application. Much was done to establish and integrate structures and procedures within the association.  This ranged from formalising committee meetings to devising appropriate methods of information storage. Efforts were also made to improve the public profile of the association and create links with eye-carers. Attention was given to providing referrals and support for people with keratoconus and many contacts were made through this effort.

We established links with Vision Australia and the Royal Victorian Institute for the Blind (which are in the process of merging). Matt’s inquiry into health rebates for keratoconus patients stemmed from the mounting frustration expressed by members with the paltry rebates paid in particular on contact lenses.

Without going into the detail of these activities, I would like to highlight some of the work done in the past year by the committee:

  • A change to the membership policy now clearly states that only people with keratoconus can be voting members of the association (or parents and guardians in the case of minors). While we welcome support from everyone, people without keratoconus will be registered as supporters. We believe it is imperative to keep control of the association in the hands of those most affected by keratoconus.
  • A draft information brochure was completed and is now being reviewed by the committee
  • Improvements to the association’s website now make it easier to find in search engines. This has resulted in a sharp jump in “hits”.
  • Links to the Keratoconus Australia website have been included on websites operated by a number of related organizations including the Royal Australian College of Ophthalmology, Vicnet health pages and Vision Australia.
  • Improved visibility on the internet has led to increased membership and requests for support – especially from people in country areas with limited access to eye-carers experienced in treating keratoconus.
  • Registered Keratoconus Australia with Pro Bono Australia for inclusion in their charity directory and online listing service.
  • Provision of support to members has resulted in contacts with eye-carers in all states. This has raised the profile of the association in professional circles.
  • Committee members gave a presentation to the Contact Lens Society of Victoria on keratoconus and the association’s activities in December 2001.
  • The members survey questionnaire has been completed and with funding now available should be sent out in the near future.
  • The Demystifying Keratoconus information seminars have been popular and the seminar on support addressed by Judith Glazner in June was a major success.
  • Tonight’s seminar on eye banking and corneal donations has been organised to meet our stated objective of supporting efforts to increase organ donations and reduce corneal transplant waiting times.
  • Videos of the seminars are being sold to many people around the country who are interested in the topics but are unable to attend the meetings.
  • We have become known to the Optometry Association Of Australia which has provided coverage about keratoconus and the Association in their regular newsletter “Australian Optometry”.  Articles have been published in the February, April and August 2002 editions. This newsletter goes to all optometrists Australia wide, and we have received substantial feedback from eye carers as a result.
  • You will be pleased to know that drought-breaking rain that fell on our end-of year BBQ held in Melbourne last December failed to dampen the spirits of the brave few who attended. Or our determination to try again in 2003.
  • Finally, we currently have 223 full members under the new membership policy including 141 in Victoria, 22 in NSW, 26 in Queensland, 12 in Sth Australia, 2 in Tasmania, 15 In West Australia, and 2 in the ACT and 2 in the Northern Territory.

So what is planned for the coming year?

  • First and foremost, the information brochure will be completed and distributed to eyecarers
  • The same applies to the members survey which may be modified slightly to include questions required for Matt’s inquiry into health rebates (more of that soon).
  • With the DGR issue behind us, we want to start some serious fund raising at every level.
  • This will include efforts to secure sponsorship for our more expensive activities such as running these seminars, brochures, booklets etc.
  • A kind supporter of KA will be making regular donations to fund basic website costs and we plan a site redevelopment in the near future.
  • A monthly or quarterly electronic newsletter by email is also planned for 2003 to keep members better informed of the association’s activities.
  • A greater publicity and marketing effort will be mounted in 2003. We will be seeking exposure through print, radio and television in the coming months. In this regard, I have arranged with the ABC Radio’s Health Report for a program on keratoconus in the near future.
  • More needs to be done to formalize the support structure. This will involve training for support providers, writing of a procedures manual and closer links to other support groups such as Vision Australia.
  • We will try to improve information offered to corneal transplant patients before and after the operation and patient resources in general. Special regard will be given to assist patients in dealing with eye-carers

Finally I would like to thank the committee of management for its efforts over the past year to keep the association operating in the face of many unexpected difficulties. Special mention should go to vice president Belinda Cerritelli who has been a driving force behind the association over the past 12 months and whose optimism and sense of humour has helped us keep things in the proper perspective. Not to mention the delicious cakes and biscuits she provides  when we invade her house  once a month for committee meetings. Thanks again Belinda!

We believe that Keratoconus Australia is making a big difference to the way keratoconus is handled in Australia. We are answering questions about the disease, referring people to experienced eye-carers, providing support and information and helping to redefine the way eye-carers deal with their keratoconus patients. All of this has been long overdue. But we need help from you too. Volunteers are desperately required to keep the association operating and to help us expand our activities. Please don’t let the association disappear through lack of support.

Thank you.

Larry Kornhauser
President

Keratoconus Australia Inc Financial Statements 2001-02

Sources and Application of Funds Statement
For the period 1 July 2001– 30 June 2002

 

Sources of Funds    

Donations

$2229.00
Raffles

$ 50.00

Video Sales

 

$135.00

Total Funds

 

$ 2414.00

 

 

 

  Application of Funds

 

 

Bank Charges

 

$10.00

Web Site

 

$428.00

Video tapes

 

$66.00

Domain Name Registration

 

$88.00

Postage

 

$19.00

Netspace Online

 

$105.00

Telephone

 

$140.00

Total Application of Funds

 

$856.00


Bank Reconciliation at 30 June 2002    

Cash at Bank July 1, 2001

$3,060.77
Plus

Sources of funds

 

$2414.00

Less

 

Application of Funds

 

$856.00


Cash at Bank June 30, 2002

 


$4618.77

 

ABN 80 683 325 208

Election of officebearers

Results of the elections for positions on the Keratoconus Australia board of management are as follows:

President Larry Kornhauser
Vice President Belinda Cerritelli
Tresurer Elena Rullo
Secretary Robyn Gillis

All officebearers were relected unopposed

 

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