The
Huntington's Scene In New Zealand |
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| About The Associations |
About the Huntington's Disease Associations of New Zealand The 3 Associations were established around 1980 by families who were frustrated by the lack of services and who felt isolated. They had become aware of similar organisations overseas, the first having been founded in 1967 by Marjorie Guthrie in the USA. Unable to support a national organisation the 3 Associations function separately to meet the needs of their members, but co-operate when it is appropriate. [speakers from overseas, Awareness Weeks, conferences and this Web Site] In areas where the Huntington's Disease Associations cannot support their own Social Worker / Field Worker the local Multiple Sclerosis Society includes the Huntington Disease families as their clients, in Midland [Waikato], Bay of Plenty, Marlborough, Nelson and Invercargill. Our Objectives 1 To provide support and advocacy for those with Huntington's Disease. 2 To provide information and support to family members and associates. 3 To act as a source of information for professionals involved with Huntington's Disease 4 To raise public awareness on Huntington's Disease. Boundaries are flexible to cater for individual and family needs. Membership is open. The National Newsletter is produced in Wellington and circulated to all members and healthcare facilities caring for people with HD. Readers can be assured that they will be able to be kept up to date with advances in research, caring techniques and issues which are important to those involved with Huntington's, both local and from overseas. Subscriptions from the Editor at PO Box 54 094, Mana, PORIRUA Youth Camps New Zealand was the first country to organise annual camps for young people from families with Huntington Disease. To assess how successful these were being Alison Gray was commissioned to do the research. Her 'Review of Camps for Young People From Families With Huntington's Disease' has found that the camps meet their objectives and must be continued. Brain Donor Scheme All Associations co-operate with the Auckland School of Medicine researchers and the Brain Donor Scheme . Other research studies may involve the Associations and the membership. All Associations promote the use of internationally accepted protocols when going through the predictive Test. We have a representative on the National Neurological Organisations Network which is aiming to provide joint representation and advocacy where this is perceived to be in the interests of the member groups and to monitor the Ministry of Health and other government agencies guidelines. It also provides a forum where member groups can network to the benefit of their own organisations and the whole neurological community and promote awareness of the needs of people with a neurological condition. All Associations have their own Trusts in which donations may be placed. The Wellington Association's trust is the 'Wellington & Central North Island Huntington's Trust' which was sponsored and is administered by the Public Trust. Our Logo The logo was designed as a symbolic head and upper torso representing the effect HD has on the cognitive and physical functions of a person, Its smaller size illustrates the reduced physical and cognitive abilities of the person with HD. The logo is shown as a flower of a vibrant plant, which recognises the growth and development of the HD Associations throughout the world. Family Planning & Prenatal Diagnosis Living with Huntington' Disease is the same in any country. The Canadian pages are a very useful description of the complexity of living in a Huntington's family and added to that is the varying support, information and services that are available locally in NZ. International Huntington Association All 3 Associations belong to the International Association which was established in 1974. It organises biennial conferences at which leading carers and scientists speak and issues are discussed and pursued. At present, the problem of obtaining insurance if at risk or with a positive predictive test, is being monitored globally. |