Prader-Willi Syndrome Association of Australia (Inc in Vic) Australian Registered Body Number 100 005 561 Incorporation number A0040590E		Our Vision: That society recognise, as individuals, all people with Prader-Willi Syndrome and acknowledge and supports their right to participate in all facets of community life. Prader-Willi Syndrome (PWS) Association of Australia Inc ABN 13 100 005 561 The national Association has been operating for a number of years but became offically incorporated in 2000. It comprises representatives from all States, where there is an affiliated PWS group. Whilst the State Associations provide support and services for members in their local area, the national Association is involved in issues that are relevant Australia wide. These include such things as the development and dissemination of educational material about the condition, liaison with Goverment on funding for pharmecutical treatments and the promotion of ethical research into management of the condition. You automatically become a member of the PWSA of Australia when you become a member of your State affiliated PWS Association. Joining a state association gives you the opportunity to make contact with other parents and exchange information. You will also receive our national newsletter, "PWS Downunder", and your state newsletter. These cover recent advances in PWS and various related topics, as well as news about the association and dates of forthcoming events. For membership forms contact the association in your state. OUR MISSION To take up, at the national level, any issue pertinent to the commitments below where this is more valuable than the State Associations progressing that issue independently. To enable the person with Prader-Willi Syndrome to live their life to the full through the facilitation of: • improved management strategies to minimise negative impact of the characteristics of the syndrome; • education of the community, including receiving and imparting the latest information from global sources; and • promotion of and involvement in research to identify medical and other interventions. To foster and develop quality services to satisfy the needs of those with Prader-Willi Syndrome, their families and carers. To provide emotional and practical support to people with Prader-Willi Syndrome, their families and carers. PWSAA ADVISORY BOARD The Management Committee has endorsed a professional Advisory Board of persons with expertise in PWS. It will be the role of the Board to: 1. represent the Association and give expert opinion on behalf of the Association; 2. help set national policies on issues such as education, employment, residential care etc; 3. provide advice and policies on ethical issues; 4. keep the Association informed of current research into PWS; 5. in conjunction with the Association, review research proposals involving Australians with PWS; 6. spread information about the syndrome among professionals; and 7. help the Association lobby for research, services and facilities. Chair PWS Professional Advisory Board Assoc Prof Peter Davies email DONATIONS The Australian Association is run solely by volunteers who give their time and often resources, freely, to help all those with Prader-Willi Syndrome. At the national level, funding comes from a small levy on the State Associations and donations. The Association has a variety of activities that it would like to undertake which require funding. These range from administrative costs that support the lobbying of Government for better services, to the preparation and dissemination of educational materials and support to families in rural and remote areas. We would like to do more, such as provide specialist training for Australian professionals, but this requires funding. Please consider making a donation to the Australian Prader-Willi Syndrome Association to help us achieve our goals. Additionally, you may consider leaving a bequest to the Association, perhaps in honour of a loved one. All contributions are tax deductible and are gratefully received. PRADER-WILLI SYNDROME ASSOCIATION OF AUSTRALIA The President Prader-Willi Syndrome Association of Australia Assist Prof Elly Scheermeyer email AUSTRALIAN REPRESENTATIVES FOR THE INTERNATIONAL PRADER-WILLI SYNDROME ORGANISATION (IPWSO) Professional Delegate: Dr Ellie Smith New South Wales Australia email Parent Delegate: Janene Lowe email		• Our Mission • PWSAA Advisory Board • Donations • PWSA of Australia   Contact • Delegates to IPWSO