MARCH 2005 Newsletter

• An Extraordinary Challenge Through the Eyes of Huntington’s Disease By: Ana Mariela F Gutierrez, Nurse, Huntington’s Disease Unit, Royal Hospital for Neuro-disability, Putney, England.
  
  
• Editorial03-05
  
  
• Stopping the Brain Drain What if the injured brain could repair itself? JOANNA WANE meets a young scientist whose research aims to stimulate stern cells to go on fix-it missions.
  
  Stem Cell Scientists Lead Way in Genetic Disease Fight By John von Radowitz, PA Science Correspondent
  
  
• Science and Research by Julie Stauffer
  
  
• Emotional Support for Carers    Adam McLean, Counselling Co-ordinator, Carers NSW
  
  
• Huntington's  Disease Research Symposium   Presented by Huntington’s Research Group Victoria and Australian Huntington’s Disease Association (Victoria) on 2nd December 2004
  
• New Zealand Huntingtons Conference Wellington

• Annual Camp For Young People 14-25yrs 17-21 April 2005
  
  

• 2005 World Congress on Huntington’s Disease
  

• Regonal News 
  

DECEMBER 2004 Newsletter

• Amaryllis House opened as pupose built home for Huntington"s Sufferers by Karen Thompson
  
  
• Editorial
  
  
• Research with Sheep   International team advances knowledge of Huntington’s
  
  
• The Development of Therapeutics for Huntington’s Disease By Gillian Bates, Medical and Molecular Genetics,
  GKT School of Medicine, King’s College London.
  
  
• Removing the Stumbling Stone
  
  
• New Zealand Huntingtons Conference Wellington
  
  
• Annual Camp For Young People 14-25yrs 17-21 April 2005
  

• Personal Story by Lyn Crabbe about her Mother Beryl Sklenars    
  
  
• Regional News from around the country
  
  
• Questions and Answers

SEPTEMBER 2004 Newsletter

• Gene therapy gives hope to brain disease sufferers An artical taken from the Auckland Herald 05.08.2004 By STEVE CONNOR (Auckland Herald)
  
  
• Editorial
  
  

• Scientists Get Approval to Create Genetically Engineered Sheep The flock of about 60 ewes will be engineered to get Huntington's disease

• Bringing a Drug to Market in Huntington’s Disease   By Isla Horvath, HSC Executive Director and CEO, and Dr. Lynn Raymond, HSC Research Council Member, Department of Psychiatry, Division of Neuroscience and Brain Research Centre, University of British Columbia

• Personal Experiences  Three Stories/Poems

• Stuart's Smoking Machine

• Predictive Testing  Should you Tell

• Regional News

• Youth Camp 17-21st April 2005

• Sarah Winckless    One half of the British Women’s Double Sculls At Athens Olympic Games
  

JUNE 2004 HD    Newsletter

• Huntington’s Advance    Research breakthrough in possible treatment for Huntington’s
  
  
• Editoral
  
  
• Bernie Degerholm
  
  
• Thank you to our Funders
  
  
• LivingPositively  The following is a speech presented at the national HD Conference in Burnie Tasmania , November 2003
  
  
• Preimplantation Genetic Diagnosis (PGD) for Huntington’s Disease using Grand Parental Exclusion
  
  
• Emotional Support For Carers X2   by Puja Brunner, Carer Support Officer
  
  
• Regional News news from around the count
  
  
• Question and Answers
  

MARCH 2004 HD    Newsletter

• Hope for Huntington's Treatment    Researchers hope to create a tablet drug for Huntington's
  
  
• Editorial
  
  
• World Congress On HD Disease    With a Difference!!!
  
  
• Highlights From Toronto ....Long but very very good
  
  
• A Readers Experience
  
  
• Simple Sugar Curbs Huntington Disease, In Mice
  
  
• Annual Camp
  
  
• Question and Answers
  
  
• Regional News

DECEMBER 2003 HD Newsletter

• Regional News
  
  
• Annual Camp For Young People 14-26 years old       12-17 April 2004
  
  
• Editorial
  
  
• Family Support drives research into brain disease by Judy Wilford
  
  
• Personial Experiences Shared by Josephine Faragher Maori Disability Services
  
  
• A Readers Experience     an interesting article regarding verbal abuse and aggression in Rest Homes
  
  
• Questions and Answers
  
  
• Running interference:it;s not allabout DNA    By Shawn Mitchell, Director of Communications and Volunteer Development, Huntington Society of Canada
  
  
• Emotional Support for Carers    by Adam McLean, Counselling Co-ordinator, Carers NSW
  

SEPTEMBER 2003 HD Newsletter

•  Secrets of the brain revealed  By Simon Collins Science reporter NZ Herald 11-07-03
  
  
• Regional News
  
  
• Huntingtons - A Family Perspective Contributions Wanted
  
  
• Encouraging Preliminary Results about LAX 101 By Shawn Mitchell, Director of Communications and Volunteer                 Development, Huntington Society of Canada, (with source information from Amarin Corporation pie and the Web                      site for the Huntington Study
  
  
• Group Language Therapy in Huntington Disease  The following is an edited version of "Maximising Participation in Huntington Disease Through Group Language Therapy" by Maria Berarducci, Speech Pathologist, Sacred Heart Rehabilitation Service, St Vincent's Hospital; Emma Power and Alison Anderson, Speech Pathologists, NSW Huntington Disease Service, Lottie Stewart Hospital; and Dr Leanne Togher, Postdoctoral Researcher, School of Communication Sciences and Disorders, Faculty of Health Sciences, The University of Sydney.
  

• The Importance of Dental Care in Huntington Disease
  

• Reader contribution
  

• Questions and Answers
  
  

JUNE 2003 HD Newsletter

• THE ANNUAL YOUNG PEOPLES CAMP  12-17 April 2003
  The tenth Annual Young Peoples Camp was held from 12-17 April at the Waihoanga Centre

• Editorial   By Mary Heron

• Regional News

• Questions and Answers

• Emotional Support for Carers.   by Adam McLean Counselling Co-ordinator. Carers NSW

• Woodrow Wilson 'Woody' Guthrie and Huntington Disease This brief account of Woody Guthrie is instructive to clinical geneticists. It tells the story of one famous man's understanding of, and struggle with, Huntington's disease.

  
  

MARCH  2003 HD Newsletter

• Final Papers from the HD Conference held in September 2002          This contribution is an overview of the presentation given at the HD Conference in September last year, and is a brief summary of the research conducted by Kristy in the course of completing her PhD.
  
  
• Caring for those with HD in Specialized Houses     by Dorothy Tortell Social Worker
  (Read in conjunction with MOH Presentation and Specialised Homes below )
  
  
• MOH Presentation to HD Conference   By Sandie Waddell Senior Locality Manager Wellington Locality Disability Services Directorate Ministry of Health
  
  
• Caring for People in Specialised Homes     By Graeme Taylor   General Manager NZCare Group Limited
  
  

• Genetic Testing for Huntington’s Disease.    Presenter: Danielle James Genetic Associate. Central Regional Genetic Services. Wellington Hospital. Presented at the 2002 HD Conference, Wellington Town Hall. September 22nd, 2002
  

• Regional News
  

• Question and Answers

DECEMBER 2002 HD Newsletter

• Editorial  by Mary Hiron
  
  
• Report of 2002 National Conference 21-22 September    by Dorothy Tortell Social Worker
  
  
• So when do we tell the Children A very good insight into the timing of telling the children about HD in their family. This is in four sections   

• My life with HD and Being employed with HD   by Mark Baker talking about being emplyed with HD
  
  
• Keeping Myself Well Using Naturopathic and Natural Therapies by Judy Lyon
  

• Research in New Zealand on Huntington's Disease and Stem Cells   By Professor Richard Faul University Of Auckland School of Medicne
  
  
• Personal Experience Shared    This is a copy of a very good speech that was delivered at the recent H.D conference in Wellington by Mark Chapple whose wife has HD

SEPTEMBER 2002 HD Newsletter 

• Editorial   by Mary Hiron
  
  
• Deciding To Go Ahead With Predictive Testing by Irina Szoorin , Member of the NSW Huntington's Disease Association
  
  

• International Conference on Huntingtons Disease 16 – 19 August 2003 in Toronto (Canada).
  

• He Won't Stop Driving " I wanted to share with you how I coped with his inability to give up driving."
  

• Research Progresses in Mitochondria Function    Dr. Greenamyre believes that understanding exactly how mutant huntingtin protein harms mitochondria may lead to new ways to protect the nerve cells that die in HD
  

• Raising Funds    By Glenis Hall of the Heart Foundation
  

• AUCKLAND/NORTHLAND NEWS
  

• CANTERBURY NEWS
  

• Your Queries and responses: Please write to the Editor or pose a question to a Field Officer, who then may be in a position to send in the query and answer for publication. We shall adopt S.P. as the initials of "our special person with HD" and in that way confidentiality is observed.
  

JUNE  2002 HD Newsletter

• Christchurch News
  
  
• Auckland/Northland News

• Your Queries and responses: New Feature, and Hears a Tip: at bottom of the page
  
  
• Time To Stop Driving
  
  
• Stem Cells and Huntington’s Disease     By Professor Richard Faull and Dr Bronwen Connor
  Auckland University School of Medicine  
  
  
• Stanford Researchers gain new insight into treatment options for Huntington disease
  
  

• Survey Results – HD Association (Christchurch) March 2002
  

MARCH  2002 HD Newsletter

• Auckland News
  
  
• Waikato News
  
  
• Research News     Hereditary Disease Foundation Scientists Find Possible Treatment For Huntington's Disease Show for the First Time How Existing Therapies May Arrest and Prevent Nerve  Damage in GeneticBrainDisorder Acknowledgement: Hereditary Disease Foundation Web Site, http://www.hdfoundation.org./ October 2001.
  
  
• Huntington's Disease Research Shows Promise New York, NY, February 7, 2002 - In the February issue of Nature Medicine, HD researcher, Marcela Karpuj in Larry Steinman’s laboratory at Stanford University Medical Center reported on a potential treatment for Huntington's Disease. Using mouse models of the disease, researchers were able to reduce the uncontrollable movements that characterize HD and extend the lives of the mice.
  
  

• Emotional Support for Carers by Adam McLean Counselling Co-ordinator, Carers NSW
  

• The ninth annual Young People’s Camp organized by the Huntington’s Disease Association (Wellington)  was held from 1-6 January at the Outdoor Pursuits Centre of New Zealand (OPC).  The Centre is situated on the western side of Tongariro National Park in the Central Plateau of the North Island.
  

• NEW ZEALAND HD CONFERENCE 2002 21-22 SEPTEMBER at the AIR NEW ZEALAND SUITE, WELLINGTON TOWN HALL  Guest speakers will include :  Dr David Craufurd from the University of Manchester, St Mary’s Hospital, UK Professor Richard Faull from the Department of Anatomy, University of Auckland, and Dr Lynette Tippett from the Department of Psychology, University of Auckland
  

DECEMBER  2001 HD Newsletter

• Report on the 14th International Meeting of the International Huntington Association, held in Denmark, August 2OO1
  by Dorothy Tortell, Social Worker, Wellington Huntington's Disease Association

• Understanding Challenging Behaviour in Huntington's Disease
  Julie Snowden
  Cerebral Function Unit, Greater Manchester Neuroscience Centre, Hope Hospital, Salford, M6 8HD, UK.
  
• Nutritional Needs of People with Huntington Disease
  Karen Keast Manager of Dietetics and Food Service, Lottie Stewart Hospital, Sydney
  From Gateway, Australian Huntington's Disease Association (NSW) Inc, Sept/Oct 2001
  
• Editorial by Virginia Nees
  
• How It All Began
  
• Canterbury News by Judith Baker
  
• Auckland News by Beth Gordon, Field Officer
  
• NZ CONFERENCE 2002
     

MARCH 2001 HD Newsletter

• THE ANNUAL YOUNG PEOPLE'S CAMP 2001 by Dorothy Tortell Social Worker
  

• Huntington's Disease Association Young Persons Camp National Park - 2001  The experience of a camp helper    by Mark Chapple

• Camp-Thoughts by some of the young people attennding the annual Camp

• HYDROTHERAPY FOR HUNTINGTON'S DISEASE This article is written by Ros Batcheler who has taken our swimming therapy classes. Her patience and understanding of Huntington's Disease has made these sessions very important and worthwhile to our clients.

• AUCKLAND AREA NEWS YEAR

• Research Jellyfish may help Scientists Decipher Genetic Mysteries By Michael Waldholz, Staff Reporter of The Wall Street Journal, September 2000 ........From HDA Newsletter UK Issue 58 Winter 2000

• Research The LAX-101 Research Project in Huntington's disease Summary of Conference Presentation by David Horrobin October 2000 ........   From HDA Newsletter UK Issue 58 Winter 2000

• SECRET TREASURE .....A song by Paul Duncan

SEPTEMBER 2000 HD Newsletter

• Huntington's and Me...Book Reviews
  (1) Reviewed by By Sarah
  (2) Reviewed by Pauline Roberts
  (3)  Reviewed by  Brendon Monk
  
• Choosing a Hospital / Nursing Home By a concerned husband describing his experiences with a Nursing Hospital where his HD wife was a resident
  
• Aucklands President Retires
  
• Auckland News By Beth Gordon
  
• Wellington News  AGM
  
• 14th International Meeting of the International Huntington Association
  
• Huntington’s Hope
  
• My Set of Wheels Poem by Darlene Uggen
  

JUNE 2000 HD Newsletter

• Auckland News by Beth Gordon
  
• Huntington’s Trust Wellington & Central North Island.A Trust set up to help HD

• New Zealand Blood Service Policy

• Best way to discuss HD with young children if a parent has HD or is at risk?
  Acknowledgement:  “The Marker”, Vol. 12, no 3, Fall/Winter 1999, Huntington’s Disease Society of America.

• Triplet Repeats in Huntington’s Disease
  This article is written by Alice Christian, Genetic Counsellor Central Regional Genetic Service’s Wellington Hospital.

• A poem A Forever Friend     Author unkown

DECEMBER 1999 HD Newsletter

• 18^th International meeting of the World Federation of Neurology Research Group on Huntington’s Disease 28^th–31^st August 1999 and 13^th International Meeting of the International Huntington Association 28^th August to 2^nd September 1999.
  
  Conferance report by Shirley Elliott-Galloway of the Christchurch HD Assocation

JUNE  1999 HD Newsletter

• Annual Young People's  Camp   By Dorothy Tortell Social Worker Wellington HD Assoc.

MARCH 1999 HD Newsletter :-
Conferances..

•   .NZ Biennial at Wellington 9-11 October
  
  
• 13th Biennial Meeting of the International HD assocations
  
  
• Mental Health Problems Associated with HD
     By Dr. K Barrett -Consultant Neuropsychiatrist Haywood Hospital Stoke on Trent October 1998
•   Wellington News    by Dorothy Tortell
  
• Auckland News      by Beth Gordon
  
  Personal Reflections (3)
  My Reflections on HD......... By Mark
  
• Reality   ...............By a 16 year old male
  
• Hang in There.....By Douglas Pagels
  
•                  Treatments for Huntingtons Disease:   Near or Distant ? Future? The following excerpts are taken from a clinical research panel at the 1998 HDSA Convention, chaired by Ira Shoulson, M.D., Louis C. Lasagna Professor of Experi-mental Therapeutics at the University of Rochester and Chair, Huntington Study Group Executive Committee.

1. Emotional Support for Carers.   By Kathy Wood NSW Australia

DECEMBER 1998 HD Newsletter

• Emotional Support for Carers   By Jane Eales
  Accepting Respite
  
• The ABC of Positive Stress Management a short article on Stress

• Huntington’ Disease responds to grafts of embryonic tissue A article by Dr Tom Miller Scientific Secretary
  
• The Forgotten Person in HD....The Spouse       by Dr Seymour Kessler
  The following article was taken from ‘Gateway’ the Newsletter of the Australian Huntington’s Disease Association (NSW) Inc September Issue.The presentation was given by Dr Seymour Kessler at a Family Support meeting of the Association.
  Dr Kessler is an Associate Professor at the University of California, SF and is one of a very few who has paid attention to the needs of the spouse of the person with HD.
  
• Passing Through   A Poem

SEPTEMBER  1998 HD Newsletter:-

• A Challenge   by Judith Baker Sec/Treasure Christchurch

• Tips for Communicating with an Aphasic (Limited Speech) Person

• Dealing with Stress by Robin Morris Ph.D. Dept. Psychology Georgia State University Atlanta

JUNE 1998 HD Newsletter:-

•   Report of Christchurch AGM by Judith Baker

• Intended Study on HD By Kristy Castiglione,BA(Hons) Psycholgy Dept.Victoria University Wellington   

•   HD and Driving an article about Driving with HD

• My Experience A story by Kathryn Pual about her Predictive Test for HD
  Also included  My Experience A Year Down The Track

MARCH 1998 HD Newsletter :-

• A Thank You letter from Elain Lucus whose HD Husband had just passed away    

DECEMBER 1997 Newsletter

•     Report on the International Huntington’s Disease Conference held in Sydney in September 1997.
    Held in conjunction with the World Federation of Neurology Huntington’s Study group.
  By Pam Chapman, Treasurer, Wellington HDA.

• Our Story By  Maree Stubbs, her story relating to HD,Testing,Marriage and Family.

  SEPTEMBER 1997 Newsletter:-

•     The Stranger a short story  by a mother and wife coming to terms with HD in her family
  

•       Public Knowledge--Private Lives    This address was presented at the Biennial Conference of the Huntington’s Disease Association (Wellington)inc   6 - 7 September 1997
      By Sue Watkin - Chairperson of the Huntington’s Disease Association England, UK. President of the International Huntington Association.

JUNE 1997 Newsletter:-

•   Behavioural Problems in Huntington’s Disease   by Dr Julie S Snowden
  The following article by Dr Julie S Snowden has been taken from Issue 50 - Winter 1996 edition of the Huntington’s Disease Association Newsletter (London)

•     A Nurse Replies to.... A Crabbit Old Women      A poem sent in by Lyn of Napier about a nurse in a  rest home

DECEMBER 1996     Newsletter:-

•    Wellington Report   by Virginia Nees (Chairperson) and Dorothy Tortell (Social Worker)
  
•     A Crabbit Old Woman   ( This appeared when the old lady died in the geriatric ward of Ashludie Hospital, near Dundee, that she had nothing of any value; then the nurse, going through her possessions found a poem. The quality of this so impressed the staff that copies were distributed to every nurse in the hospital.)