About the GBS Support Group
Our Legal Status
The GBSNZ Trust is a registered charitable trust with a certificate of incorporation under the Charitable Trusts Act 1957 issued by the Ministry of Economic Development on 21st May 2001 (registered No. WN/1140718). Registered under the Charities Act 2005 No. CC20639.
Our registered office is
30 Higgs Road
Mapua 7005, Nelson
P.O. Box 21 Mapua 7048
Phone 03 5403217
027 687 1953
Membership of the group is free. Members receive a quarterly newsletter and are able to attend, speak and vote at the annual general meeting. A membership application form is available for download in Microsoft Word format at this link.
Our status as a charitable trust provides for tax rebates for donations of $5 or more from individual donors. Public companies qualify for deductions for cash donations. Qualifying gifts are exempt from estate and gift duties and property conveyancing fees. Our IRD number is 79-494-453.
Board of Trustees
Medical Advisory Board
We have a medical advisory board led by Dr Gareth Parry that provides advice and information on individual questions raised by members of the group through Tony.
Dr Gareth Parry
Professor Emeritus, Department of Neurology,
University of Minnesota, USA
Dr Susie Mudge
Director & Physiotherapist Neuro Rehab Results
Senior Lecturer/Senior Research Officer
Health and Rehabilitation Research Institute, AUT University
Dr Chris Lynch
Neurologist and Neurophysiologist at Waikato Hospital
Honorary Senior Clinical Lecturer at Auckland
Medical School Waikato Campus
Dr Dean Kilfoyle
Neurologist Auckland City Hospital
Auckland District Health Board
Senior Physiotherapist Neuro-Services
Neurologist with Southern DHB
Dr.Vic du Plessis
Neurologist and rehabilitation specialist
Part time consultant neurologist, Dunedin
Support Group History
The group started in the late 1990s as a result of the late Jenny Murray’s letter in Woman’s Day asking if anyone in NZ had experienced a similar problem that her sister Dulcie had just been diagnosed with – GBS. A couple of people responded including Terry Watton – our first president – who like the others had had GBS. From those small beginnings, involving much personal commitment, the group was formed
In 2003, the late Jenny Murray was awarded the Queen's Service Medal in recognition of her work for the group.
Support Group Aims
Our main function is to provide a contact point for newly diagnosed patients and to get information to a patient and his/her family as soon as possible after diagnosis. It is the initial stages of these illnesses that is the most frightening, and when a visit from a recovered patient and information about this illness with the weird name is most valued.
As there is no automatic system of notification from hospital organisations, we rely on the patients, their families, carers and friends to make the initial contact. We have an increasing number of authorised hospital visitors around the country who are willing to visit a GBS/CIDP patient in hospital to give reassurance and support to them and their carers and families – contact Tony for details.
Research into the cause and “triggers” that cause the onset of GBS and its derivatives is actively being pursued in Europe and the USA, and the GBSNZ group aims to keep its members in touch with the latest developments in these important areas through its quarterly newsletter and this website.
Support Group Activities
Visit our Facebook group.
Because of the rarity of these illnesses and the geographical spread of those affected throughout New Zealand, it is virtually impossible at this stage of our development to hold regular group meetings. There are a number of active discussions groups in the major NZ centres. Contact Tony for the nearest contacts in your area.
We produce annual audited accounts and hold annual general meetings each year.
Bay of Plenty and Waikato hold coffee mornings. . Please contact Chris Hewlett 07 549 0931 for details. Email Meike email@example.com. Phone Meike 0273250369 or Chris 027 6113246.
The Hawkes Bay area have occasional get togethers: Contact Lil 06 8375696 or Shona 027 firstname.lastname@example.org. or Beverley Whittaker 021 0298 8302
West Auckland Area “coffee and chat”. If you are interested in forming a group please contact Grant and Sharon Dixon 09 4731128 or email email@example.com, or Eileen 09 444 8382 or 0211133607 or firstname.lastname@example.org.
On a biennial basis we hold a national conference. Information on the next AGM and conference will be published in due course, and you can follow the groups activities in our newsletter.
GBS SUPPORT GROUP NEW ZEALAND
The Group endeavours to organise a Conference every two years in various venues around the country. Conferences have previously been held in Auckland, Wellington, Rotorua with the next Conference to be held in HAMILTON.
Conferences are usually held over a weekend to coincide with the Annual General Meeting of the group and these traditionally are in late April or early May.
An informal gathering of members and presenters is held on the Friday evening. The Conference proper is held throughout the day on Saturday followed by a formal dinner in the evening. Sunday morning is devoted to Board Meetings followed by AGM.
In formulating the content of the Conference, the Group is fortunate to be able to draw on the considerable talent of it's Medical Advisory Board led by Dr Gareth Parry and is made up of some countries leading experts in the Neurological field and especially in the diagnosis and treatment of GBS/CIDP and the rarer variants of the Syndrome.
The next Conference will be held over the weekend of 26/27/28 April 2019 at the IBIS Hamilton Tainui Hotel at 7 Alma Street Hamilton.
Registration forms for the Conference can be obtained from the Treasurer Peter Scott at email@example.com or can be downloaded following this link:
We would like to acknowledge the support of our main sponsors: