The Huntington's Scene In  New Zealand

Site Maintained by
Graham Taylor

Our Social Worker in Wellington is on call to all members and those with HD . Aware that those in Greater Wellington were getting a better deal than those out of the city we have established 2 very part-time Social Workers in Napier and Wanganui. Those in Nelson and Marlborough are being supported by the Multiple Sclerosis Field Workers.

We produce the 'HD National Newsletter' which is distributed nation wide.

Much time and effort goes towards support, advocacy and lobbying for more flexible services needed by the HD families. These services need to be able to respond rapidly to the changes which arise. The Association is committed to ensure that those with HD have a good quality of life and can be maintained at home as long as possible.

Services Offered

1.    On Call  An answer phone is always on to take messages. A cell phone ensures that calls can be received most times.

2.    Support Groups are held in Wanganui, Hawkes Bay, Gisborne, Wellington, Blenheim and Nelson. These groups meet every 4 -6 weeks. For those with HD: A Music Group and a Hydrotherapy Group have become popular activities with each group meeting fortnightly.

2b.Camps for Young People from HD families

  Now in their 5th year, NZ was the first country in the world to organise camps for young people from HD families.

    The  Assocations are thrilled and committed with the success and the young people have grown to depend on the camp.

    After describing these camps at an International Huntington's Assocations Conferencewe were asked if we had any research done to prove value/use of these expensive camps.Alison Grey was commisioned anher review of the camps convinced us that they were succesfuland must be continued.

•      Review of Camps for Young People from HD families by Allison Gray

•     The full report of the Camp by Dorothy Tortell Social Worker, outlines the Objectives , Activeies and Evaluations.

3.    The Predictive Testing Programme in the CRHA region is offered by the Central Regional Genetic Services at Wellington Hospital. The Huntington's Disease Association in Wellington has in the past offered a Support Group for those at risk and those going through the predictive test. Anyone wanting this or other support can contact the Wellington Social Worker. REVISED HUNTINGTON DISEASE PRESYMPTOMATIC TESTING PROTOCOL . To see how families were coping with predictive testing the Huntington's Disease Association in Wellington commissioned Alison Gray to conduct the research based on a similar one carried out in Victoria, Australia.

Research Into Family Respones to Predictive Testing  by Allison Grey

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