Location: Louise Soames' home - 235 North West Arm Rd, Grays Point, NSW, 2232

Time: Meeting started at 8.00 pm

Present: M. Apperley - President; Malou Sackett - vice-president; John Sackett - treasurer; Louise Soames - Secretary.

Items of Business and Actions Arising

1. Presidents Report
In 2004 we have had several successful activities: Networking Meeting on Feb 9 discussing Therapies; International and Australasian Conference in Christchurch New Zealand over Easter and the Annual PWS Picnic on May 3 at Bobbin Head. The next Networking Event will be June 7 and is to be a feedback session on the International conference.

2. Treasurers Report

2.1 Financial statement was tabled. Of concern is that only 36 members + 7 concession members have paid their membership renewal for 2003-2004. Need to get renewals in and get an indication of whether they want to stay a member of the association.
ACTION 1: MA to write a letter reminding people that their membership renewal is outstanding. Suggest put self-addressed envelope in with the letter so it makes it a bit easier.

2.2 Will need to pay membership to the National Association soon: $7 per member for fee to PWSAA and $5 per member for Open Door subscription.

2.3 JS suggested whether it is an option to remove membership fees and just advertise donations - which are tax deductable. This was discussed at length and it was agreed to take this to the wider membership - possibly as extraordinary business at the AGM ?. Wait until the response to our letter seeking late payment of membership fees comes back and see how many people have indicated that they will give a donation.
ACTION 2: Need to establish when the AGM notices are sent out.

2.4 Three donations were recently received in memory of Mrs. Maisie Henry who was the great-grandmother of a child with PWS and a supporter of the association.
ACTION 3: MA to write to the families who made the donations thanking them for their support.

2.4 Insurances - The insurance are due and JS still waiting on a breakdown. Can expect them to be high because of the insurance cover the Association has for the carers and camp activity.  (Additional note by JS.  Invoice for insurance came in at $3800 but after some discussion was lowered to $2500.  Still too high for the Ass to absorb.)

Action 4: JS to discuss with Barry Greensmith of the PWSAA as to possibility of using National cover.  ((Additional note by JS.  Have discussed with BG and Barry is also very concerned about the cost.  He did not believe that the Aust Ass has sufficient funds to help with the cover and is also concerned about insurance cost for the next conference??)

3. GENERAL BUSINESS
3.1 Katie McKay made a request for the Association to consider how it may support a member who has recently been in a serious motor vehicle accident in a practical way - possibly by using Association funds.

Several ideas were proposed but usually Association funds are not applied to help in this way. The association has limited capacity to provide long-term support of the type that may benefit the family. It was also discussed that other agencies may be involved e.g. social worker through the hospital system and that might be the most appropriate support at this stage.

It was decided that the Association would be active in reaching out and maintaining informal links with the member and her family e.g. cards, flowers etc so that they are reminded that the Association is there for reference if any needs arise in the care of their child with PWS. MA proposed that the membership for 2004-2005 be waived for the family but their membership status be maintained.

3.2 MA proposed to advertise 2 "Positions Vacant" amongst the Association membership. The positions are to be 1) Librarian/Information Officer with the role of promoting and managing the inventory of written and video resources that the Association has and 2) Fund Rising Co-ordinator with a role to help with the raising of funds to supplement the funds received through membership fees.

These roles can both suit a person who cannot get to meetings in Sydney but otherwise would like to be involved in the Association. The positions may also be suited to a person who is one-step removed from caring for a person with PWS e.g. a grand parent.
ACTION 5: MA to prepare flyers advertising the positions before the AGM.

3.3 PWS Camp - Maurie Sapcavento has made some enquiries as to alternative locations for a PWS camp in 2004. Milton Island will no longer be available. JS and LS are to liaise with Maurie before making a final decision as to whether a camp will be held in 2004 and if so the location.  (Additional note by JS.  Have discussed further with Maurie and it would appear that unless something can be done about the insurance situation, the camp cannot go ahead in its normal form.)

4. CORRESPONDENCE

4.1 Correspondence from ACROD. MA has replaced MS as the delegate to ACROD.

Meeting Closed at 10:00 pm