Huntington's Disease Associations of New Zealand

15 Jun 10

SITE MAP

An overview of the web site with links

Key:
Pink underlined text: links that are accessible from this page.
Green underlined text: external links that are available from the relevant page.

Home
About the HD Associations
Huntington's Disease Information
- Predictive testing for HD
- Presymptomatic testing protocol
- Family planning and prenatal diagnosis
- Living with HD - Case Study 1
- Behavioural Problems in Huntington’s Disease - Page 1
  - Page 2
  - Page 3
  - Page 4
  - Page 5
  - Page 6
- Coping with Behavioural Disturbances - Page 1
  - Page 2
  - Page 3
  - Page 4
  - Page 5
  - Page 6
- Pages for young people
  - Huntington's in My Family by Jenny Taylor
  - The Courage to Go On by Sara Duncan
  - The Juvenile HD Caregivers' Club (external site)
  - Juvenile Huntington's (external site)
HD Resources
- Publications
  - Genes & Generations by Alison Grey
  - Huntington's and Me by Alison Grey
  - Handbook on Health and Nutrition, edited by Dorothy Tortell
  - Personal Perspectives on Genetic Testing for HD (external .pdf file)
  - A Physician's Guide to the Management of HD (external .pdf file)
  - Caregiver's Handbook for Advanced-Stage HD (external .pdf file)
  - Understanding Behaviour in Huntington Disease (external .pdf file)
  - Loss and Grief, Coping with the Death of a Loved One and with Other Losses Related to Huntington Disease (external .pdf file)
  - What is Huntington Disease?: A Brief Description (external .pdf file)
- National Conference Information
  - 2008 National Huntington's Conference
  - Conference Programme and Registration Form
  - 2005 National Huntington's Conference
  - 2002 National Huntington's Conference
  - Keeping Myself Well Using Naturopathic Medicines (Judy Lyons) - Page 1
    - Page 2
    - Page 3
    - Page 4
    - Page 5
    - Page 6
  - International Meetings (1999) - Page 1
    - Page 2
    - Page 3
    - Page 4
- Camps for Young People from HD Families
- Information from around the world
  - Huntington's Disease Video Awareness Theatre (external site)
  - Highlights from Toronto - August 2003
  - How Huntington’s Disease Affects The Brain
- Naturopathic Medicines and Therapies
Report on Amaryllis House, January 2008
HD Newsletters
- in .pdf Format
- 2008
  - December (Issue 103)
    - Dilemma of tests that end, confirm hopes (newspaper article)
    - HD Lapel Pins For Sale
    - HD Research Update By Don Lamont, Huntington Society of Canada
    - The generation of a transgenic sheep model of HD: progress to date and plans for the future
    - Reasearch The Nano-Neuro Initiative at University of Queensland
    - Personal Story - Kimberly Dark
    - Regional News
  - September (Issue 102)
  - June (Issue 101)
    - Home is Where the Help Is About Mark Baker
    - Personal Story By Maree Thomson
    - Amaryllis House Cecil O'Neale
    - Building Services Around Our HD Families Dianne Collins
    - 10 Tips For Brain Fitness The Neurological Foundation offers tips to sharpen up
    - Drumming up HD awareness Trey Gray, drummer
    - Regional News
  - March (Issue 100)
    - Editorial Glenys Shepherd
    - You Are Wonderful Virginia Hogg, HD Researcher
    - Amaryllis House: A review of the service model and added value
    - Palliative Care Partnership Kate Gellatly, Palliative Care Nurse Specialist Educator
    - Changes to memory, concentration, and thinking: Information for patients and their carers
    - Amaryllis House 2008 by Margaret Simmons and Anne Edwards
    - Presymptomatic Testing of Minors for HD Invitation to participate
    - New Zealand Huntington's Disease Conference "More Pieces of the Puzzle"
    - The Grey Mile Personal Story
    - Auckland Committee Update
    - Regional News
- 2007
  - December (Issue 99)
  - September (Issue 98)
    - Young Scientist of the Year Award Jessie Jacobsen
    - Symposium to Celebrate the Legacies Created by Sir Roy McKenzie.
    - A Report on the 2007 HD Therapeutics Conference Jim Tretheway
    - Research Report Does Environmental Enrichment Have A Future As A HD Treatment?
    - HD Australia: An Internet forum for all Families effected by Huntington's Disease
    - Asparagus and Ham Crêpes Readers Recipe
    - The Huntington Study Group By Leslie Briner
    - Regional News
  - June (Issue 97)
    - Young People's Camp 2007 18 - 21 April, Waikanae
    - The Healthy Brain Program Australian Brain Foundation
    - Hopes For New Huntington's Disease Treatments
    - When HD Came to Tea HD Assn of Ireland
    - Prince Memorial Charitable Trust - Update
    - Outward Bound by Ben Sullivan-Brown
    - Readers Recipes recipes submitted by readers
    - Caregiver's Retreat 3 - 4 March, Palmerston North
    - Regional News
  - March (Issue 96)
    - How it all Began The role of Lorree Adam.
    - Prince Memorial Charitable Trust
    - Port of Tauranga Half Ironman Saturday, 6 January 2007
    - Carly's Ironman Challenge 3 March 2007
    - "Another Piece of the Puzzle" 2006 Australian Conference
    - Hunt 4 Huntington's Wednesday, 14 March 2007
    - Exercise For Mind And Body
    - Annual Camp For Young People
    - Regional News
- 2006
  - December (Issue 95)
  - September (Issue 94)
  - June (Issue 93)
    - Carly's Triathlon
    - Foetal Cell Transplants Slow in Huntingtons Disease
      - Foetal Tissue Grafts Slow Progression of Huntington’s Disease (external site)
      - Brain cell transplant slows advance of fatal disease (external site)
      - Transplant hope for Huntington’s sufferers (external site)
    - Hype and Hope In The Media
    - Use Of The Internet to Obtain Information on HD
    - Twenty Top Tips For Carers
    - Feeding In The Late Stages Of HD
    - Will Browns Battle With HD
    - Regional News
  - March (Issue 92)
- 2005
  - December (Issue 91)
    - Guest Editorial by Louise Boyle Chairperson - HD Assn Christchurch
    - From Hell to a Cruise and Home Again by George Pallet
    - Pioneer Delighted at 'Oscar for Science' (Richard Faull)
    - HD and Driving
    - Caregivers’ Payments Reviewed
    - Eating Fish Associated with Slower Cognitive Decline
    - Twelve Years On (Dorothy Tortell Social Worker)
    - Regional News
  - September (Issue 90)
  - June (Issue 89)
    - Guest Editorial by Chris Lock, AHDA
    - Emotional Support for Carers by Adam McLean, Carers NSW
    - The Annual Young Peoples Camp, April 2005
    - What HD Means to Me from group discussions at the 2005 Camp
    - Coping With HD from group discussions at the 2005 Camp
    - Tips for Carers Walking for Good Health
    - Towards Tomorrow: 2005 National Huntington's Conference
    - Regional News
  - December 2001
    - Behavioural Problems in Huntington's Disease by Dr Julie S Snowden
HD Research
- Neurological Foundation (external site)
- Dr Brain - article from North & South (external site)
- The Neurological Foundation of New Zealand Human Brain Bank
- International Research News
  - HSC Media Release, June 16, 2006 (external .pdf file)
  - CMMT Media Release, June 16, 2006 (external .pdf file)
  - HSC Media Backgrounder, June 16, 2006 (external .pdf file)
  - Simple Sugar (Trehalose) Curbs Huntington Disease in Mice
  - Hope for Huntington's Treatment
  - Gene therapy gives hope to brain disease sufferers - August 2004
  - Transplant Hope for Huntington's Sufferers
    - Original Article (external site)
  - Bringing a drug to market in Huntington's Disease
  - Choosing Quality Health Care - A Guide
  - Drug treatment promising for halting Huntington's-related nerve death
    - [Link to original article] (external site)
    - Link between neuronal calcium channel, mutated gene that causes Huntington's disease identified (external site)
    - Grants funded in 2003 (external site)
    - Enoxaparin - About this drug (external site)
- Alison Gray's review of Camps for Young People Part I
- New Book by Pauline DeLury
  - Questionnaire
HD Contacts in New Zealand
HD Sites and links
- External links
Acknowledgement and disclaimer

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Appreciation and thanks must go to Judy Lyons for compiling the wealth of information available
on this site, and to Graham Taylor for maintaining the original site for so long.