I felt it was important to write an additional President’s report to the one I presented at the AGM. A number of issues have come up, that I need to share with you.
Before I go on too much I have to say a big thankyou to Rosemary Langley and her team who for the second year in a row organised a successful bridge lunch and raffle. Their magnificent fundraising venture netted approx $2400. We acknowledge a significant contribution by the Frank and Hilda Perry Charity Trust of $500. Thanks also go to Malcolm Creek Wines for their support. Everyone’s contributions are very much appreciated by the Society. (Unfortunately no photos are available from the event.)
I am pleased to announce that for the second time the Adelaide Bank Charitable Foundation has assisted our Society with a donation. This time round they have generously given us $5300. We have used this to purchase badly needed computer equipment – specifically a desktop publishing setup. We now have a new computer complete with 19-inch monitor, scanner, laser printer and digital camera; we are now able in our office to complete the layout and design of all our publications. More will be revealed in the next edition.
I was personally privileged to attend the International ME/CFS Conference in Sydney in December 2001. The conference was outstanding – with a truly international mix of speakers presenting a wide range of material.
We can be very proud as Australians that we were involved in putting together a world-class event. For those of you who didn’t catch the September Talking Point – I’m happy to let you know that our Society contributed $4000 to the event.
Dr Rosamund Vallings has written an excellent summary of the event and that has been included in the medical section.
Christine Hunter and her team are truly an inspiration. If you have not done so already, please visit the Alison Hunter Memorial Foundation Website (http://www.ahmf.org/). It is the best resource for ME/CFS in Australia. Take a bit of time to read about the foundation and read about Alison Hunter. You’ll see where Christine’s drive and motivation comes from.
From my point of view it was great to network with the committee members of other states. I think this is timely as there was a big turnover on the National Exec. The bulk of the National Association board were at the conference and having now met each other it will help us to function as a team. (The National board only meet by phone hookup).
The only disappointment is that the conference made a loss for the AHMF.
It is my pleasure to report that at the AGM the following people were elected to the Management Committee on December 15, 2001: Paul Leverenz; Peter Cahalan; Peter Evans; Kirsty Cordingley; and Geoff Wilson. (Marg Wing is continuing on.)
Further positive news is that we co-opted 3 additional members to the committee. They are Penny Cahalan who will serve as Secretary, Adrian Hill and Glenn Domeika.
The policy of the Management Committee of the Society is to refrain from writing to members to ask for donations for project x, or to plea for x-thousand dollars for a Christmas appeal (although we reserve the right to do so in a genuine emergency). This is because so many of our membership do not have the means to assist; similarly many of you are genuinely quite badly off in terms of your health, and we also acknowledge that on top of this illness you do not deserve to have to raise money to help provide services for yourself – services that others would get without question, and with sympathy to boot. In view of this policy we prefer for the people who can contribute to make donations without the letters and pressure-large donations and fundraising efforts will be noted in Talking Point (unless the contributors ask not to be revealed).
Having established that general point I think it is important from time to time to encourage you to ‘remember your Society’ when it comes to donations. Many of us give to other charities and we don’t even think about it – to door knockers, to street collectors and perhaps even telemarketers. We also participate in lotteries for charity ‘hoping we will win the big prize.’ This all adds up over the course of a year. It is not my intention to deny the merits of other charities – I will just say that many of them have significant government funding where we have none at present. Because of this fact I won’t lose any sleep over encouraging you think about us a little more. Sometimes it is easy to forget ‘the cause in our own backyard’ which is ME/CFS.
’The guidelines’ will be published in the Medical Journal of Australia sometime in late February / early March. A third draft was released for final checks early in 2002. As explained elsewhere, this final draft was not distributed to our National Association. We have learned that although there are some changes they are not substantive (as we expected.) In view of the lack of radical change the National President has sent a letter on behalf of us all to the Consumer Health Forum (who have had a representative involved in the process) asking them to reject the guidelines.
It is disappointing that these guidelines will be printed, and especially so as the UK guidelines have just been released – they are far superior. Perhaps this timing will be to our advantage? Time will tell.
On May 31 we’ll be holding a badge day in the city. (Done really well we can expect to raise $3000-$5000.) Our need is to get persons outside of our membership to assist us with the collecting. We would love to hear from you if you have any contacts with any service clubs, social clubs or church youth groups – ones that might be prepared help out with this sort of thing. The more support we can get from such groups the better.
I have great pleasure in announcing that things are looking up with regard to our office hours. For now they have been extended to Tues and Thurs 10am-4pm. We hope by May to be open for a third day in the week.
I am looking forward to this year – I expect us to consolidate on the rebuilding year we had last year. Let’s hope a successful Awareness Week this year can bring more members into the Society.
Paul Leverenz
President
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Copyright ME/CFS Australia (SA) Inc
Reprinted from http://www.sacfs.asn.au/