History of the Society |
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The Society was formed in 1977 by parents and friends of those with O.I. and is a voluntary organisation with no paid staff or Government funding and incorporated under the seal of the Corporate Affairs Commission at Sydney on 5th May 1978. The Company Number is 204 932-15. The Australian Company No. ACN 001534309. The Society is registered as a company limited by guarantee under the Companies (NSW) Code. All donations to the Society are Tax Deductible. The business affairs of the Society are managed by a Board of at least six persons and no more than 12, including a President and two Vice Presidents, all of whom are elected at the AGM. The Society has been most fortunate over its 25 years with the outstanding dedication of its Board members and particularly in the strong leadership shown by its seven presidents in pursuing the Society's aims. Special credit should be given to the sterling work of the early presidents who had the most difficult task of getting the "show on the road" from a standing start. At that time, little was known, not only by the medical professionals on Osteogenesis Imperfecta, but also the numbers and distribution of its sufferers within the Community. Since the Society's inception, the Committee has been composed almost entirely of relatives of children and adults with O.I. As mentioned earlier, as the number of OI people are comparatively few and widely scattered, the enlistment of personnel to run the Society has always been a problem particularly as most of those volunteering have little or no experience in management of a charitable organisation. However approximately 50 stalwarts have come forward over the years and despite the difficult learning curve they all experience, the progress and success of the Society has been creditable.
Research Work into O.I.Research work undertaken in the field of O.I. by Professor D.O. Sillence and his peers since 1979 has been recognised world wide. It is impossible to elaborate here on such a subject although comments below may give some idea of the magnitude of the work that has been undertaken. a) Since 1979 Prof. Sillence, together with his peers has published 17 papers relating to O.I.. These publications contain contributions by many specialists experienced with problems of O.I. including much of Prof. Sillence's and Dr Barlow's work over the years in their diagnosis and management of the brittle bones problem. Again in 2001, there was further updating when a third publication "Osteogenesis Imperfecta - Caring for Children and Adults" was published in conjunction with the 2001 launch of "AGSA/ConnecTeD Personal Health Card" This volume of 14 pages was compiled by Prof. Sillence and Dr J. Ault and published by the Childrens Hospital, Westmead. Its contents include:
Professor David O. Sillence M.B., B.S (Hons), M.D., F.R.A.C.P., F.R.C.P.A.The O.I. Society has indeed been blessed since its inception with the services of David Sillence. He has been the mentor, advisor, counselor both medically and personally of every O.I. sufferer and their family who have come to him for help. He has not only given of his time unstintingly to the Society and its members, but his contribution to the research into various facets of O.I. has placed him as one of the leaders on the world stage in this field. His C.V., filling over 30 pages, will give some indication of his dedication to his profession and in particular his specialised field of genetic studies. For many years he was Head of the Department of Genetics at Royal Alexandra Hospital for Children at Camperdown, NSW; Head of the Department of Paediatrics and Child Health, University of Sydney NSW; Professor of Medical Genetics, University of Sydney. These appointments are but a small sample of the positions he has held since the completion of his postgraduate training where from 1975-1977 he carried out research work into Osteogenesis Imperfecta. Then from 1977 - 1980 he was Fullbright Fellow, Division of Medical Genetics - UCLA Medical Centre, Torrance, California. Here he completed his post-doctoral fellowship in Medical Genetics and supervised training the anatomical and Fetal Pathology. We in the Society see David not so much as the Medical Specialist, but rather someone in who we can always confide our concerns for the future of our children or ourselves. At every gathering of Society members, be it a Christmas Party, Annual Ball or AGM, both he and his wife Dr Jennifer Ault, a specialist in Physiotherapy and Rehabilitation, never fail to attend so they can listen and advise on our day to day problems of raising and caring for our loved ones. Geoff Boreham M.B.E., Secretary 1982 - 1986Special mention must be made here of the contribution the Society received from Geoff Boreham. Geoff, a retired accountant in his late 60s answered an advertisement for an Honorary Secretary for a small charitable organisation for 1-2 days per week placed in the local press by then President, John Roberts. His experience for many years prior to his retirement was of Senior Officer of the Chief Secretary's Department with obvious wide experience in administration at the top level. The object of his application for this position with the Society was simply to help a struggling organisation with limited facilities, as a part time retirement job. He had no previous connection with O.I. Geoff had been decorated shortly after the end of World War II with an MBE for his services as Captain in the AIF in Changi Camp, Singapore where, for three years, he was responsible for organising the rations for all Australian troops in the POW Camp. His work for the Society was, of course, invaluable. He formulated procedures and documentation and set up its operations on a sound professional foundation, which has remained unchanged to the present day. It was indeed a great loss when Geoff died in 1986 from a heart attack while in office. |
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