Posted - March 2007 in HSPRF News
The 2005 – 2006 Annual Report of the HSP Research Foundation was presented at the Annual General Meeting held in Sydney in September 2006 by President Robin Bligh.
Highlights of 2005 – 2006
- $44,000 was raised by members and their contacts and $14,000 from corporate grants and donations to fund one year of research work. The work commenced in May 2006 at the ANZAC Research Institute (ARI). The Project is to develop low cost tests, using the advanced equipment and science available at the ARI, to find and identify the mutation causing the individual’s specific condition.
- Completion of the first financial year and first set of Accounts while members learned much more about their disease and its cause and the Committee learned much about operating in the not for profit sector.
- Deductible Gift Recipient (DGR) endorsement was received from the Australian Tax Office thus enabling the raising funds on a competitive basis with the thousands of other charities. Endorsement as an income tax exemption charity has not been applied for yet as it requires presentation of 12 months of accounts in the application.
- Gene testing for Australian sufferers has been limited by the high cost of overseas testing and unavailability of testing in Australia. However, the Foundation was able to negotiate a much improved price from a European lab, although the cost was still $1500 for a single gene and still unacceptably high. These tests are not funded by Medicare.
- At a series of meetings in four States and conducted in conjunction with Clinical Geneticists at five major public hospitals, the HSPRF was introduced to many HSPers. Those attending responded enthusiastically to the formation of the HSPRF and supported its intent. People with HSP subsequently found the sharing with fellow HSPers at meetings beneficial.
- A programme was commenced to build a community of HSPers in Australia using modern technology to overcome the geographic spread of members and mobility limitations.
- The interactive website, www.hspersunite.org.au was created to make known the existence of the Foundation and provide a first contact point for information. A Brochure has been produced and circulated.
A full copy of the Report is available (PDF document; 150KB)