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Issue 96, March 2007

"Another Piece of the Puzzle"

The 2006 Australian Huntington's Disease Association National Conference

I was fortunate to attend the conference held at Hotel Y in Melbourne CBD, 15-17 November 2006.

The events began with a cocktail reception on the evening of the 15th. The Australian Huntington's Disease Association (AHDA) patron Mike Brady launched the association's new book 'Kaleidoscope-Journeys with Huntington's Disease. Kaleidoscope is a book of 28 stories written by people whose lives are touched by Huntington's Disease.

Over the next two days a range of speakers from both Australia and overseas shared their research studies on HD as well as their practical experience.

Dr Tony Hannan (Howard Florey Institute, Melbourne) 'Update on Transgenic Research at the Florey Institute'.
Current research includes a large screen for genes whose expression is affected by the HD mutation in the cerebral cortex and striatum, and to identify the subset of genes whose abnormal expression is rescued by environmental stimulation. The hypothesis is that this will identify molecules which provide targets for 'enviromimetics' (Hannan, 2004) - novel drugs which mimic or enhance the beneficial effects of environmental stimulation.

Dr Claudia Downing (University of Cambridge, UK) spoke about 'Becoming and Being Parents in Families Facing HD'.
The focus was on reproductive decision making in the face of HD: whether any child will inherit the disorder and whether the at-risk parent will be able to care for children should he or she develop the disorder. Her paper drew on two recent qualitative interview studies to incorporate the impact of the introduction of genetic testing and ongoing research seeking treatment and cures in reproductive decision making.

Dr Mac Gardner (Genetic Health Services, Victoria) 'Having Children but Avoiding Passing on the Gene'.
Prenatal testing (CVS), preimplantation genetic diagnosis (PGD) and exclusion testing were discussed along with the common ethical issues that arise.

Janet Etty- Leal-(Meditation Capsules) Alternative Therapies Workshop
Janet discussed the benefits of meditation and simple techniques to enhance health and happiness. The session included a practical component. She shared her research findings based on the work with her HD client group at Arthur Preston Residential Services in Melbourne.

Helen Brewer -HD (England & Wales) London, UK) 'Juvenile Huntington's Disease (JHD) and the Work of the European Huntington's Disease Network (EHDN) Working Group.'
An update on the progress of a modified rating scale for JHD, the work of the EHDN JHD Working Group to assess the impact of JHD from a family perspective, and the recent international discussion meeting.

Margaret Simmons and Anne Edwards (Amaryllis House, NZ)
This presentation highlighted the everyday life and running of the first dedicated residential care facility for people with Huntington's Disease in New Zealand. Margaret and Anne shared their experiences, philosophy of care and described their client centred approach with residents.

Several workshops were run over the two days. I attended the following:

Managing Challenging Behaviours - Dr Jane Paulsen, (the University of Iowa, USA) Dr Paulsen's session highlighted why difficult behaviours may be occurring in HD. An overview of the anatomy of the brain and related behaviours and focused particularly on the role of the caudate. The impact of the environment, including people, events and/or health issues as well as practical solutions to manage difficult behaviours was discussed.

Legal Aspects of Genetic Disorders - Emma Wooley-(Hall and Wilcox,) This presentation addressed issues specific to people affected by HD including Wills, Power of Attorney and the legal implications of predictive testing.

Living Positively with the HD Gene - (Judy McKenzie/Tony Mims/Eva Lynch) Three gene positive, non symptomatic individuals spoke about their own experiences with a parent suffering from HD and how being gene positive has impacted their life decisions.

The Economic Impact of HD on Well-Being - Candice Roberts, (Deakins University) Findings to date of a study to understand the impacts of financial strain on people with HD and their families. Impacts on relationships, work and recreational changes and the intergenerational impact of HD as well as financial aspects of the illness, such as cut backs in spending, and changes experienced in income levels.

Maturity of Judgment in Decision Making for Predictive Testing - Fiona Richards (Children's Hospital, Westmead, NSW) Discussion and debate about the international guidelines developed for the provision of predictive testing. Evidence was presented to demonstrate the reduced decision making capacity that young adolescents have because of incomplete brain maturation. Research with adults undergoing predictive testing was also presented which highlighted the potential for harm in testing adolescents

I would like to acknowledge and sincerely thank the Neurological Foundation of New Zealand for the travel grant they generously provided.

If anyone is interested in purchasing a copy of Kaleidoscope, the Australian Huntington's Disease Association is selling the book for $20.00 plus $5.00 p& h ( Australian Dollars). I also have two copies of the book available for loan in the Wellington region.

Lynn Farrow Social Worker Wellington HDA

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