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

tonypearson@xtra.co.nz

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.

Our Patron

Steve Chadwick
Hon. Mrs Steve Chadwick

Board of Trustees

President

Doug Young
Doug Young

National co-ordinator/Secretary

Tony Pearson
Tony Pearson

Treasurer

Peter Scott
Peter Scott

Trustees

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Dr John Podd
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Chris Hewlett
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John Davies
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Meike Schmidt-Meiburg
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Pralene Maharaj
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Beverley Whittaker
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Matt Peacey

Newsletter Editor

Chris Hewlett

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
ONZM,MB,Chb,FRACP
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 Pralene Maharaj
Pathologist at North Shore Hospital in Auckland.
Member of the GBS Support Group since contracting GBS in 2006

Dr Dean Kilfoyle
Neurologist Auckland City Hospital
Auckland District Health Board

Kathryn Quick
Senior Physiotherapist Neuro-Services
Auckland DHB

Dr.David Gow
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.

In 2009 Dr Parry was appointed an Officer of the New Zealand Order of Merit recognising his outstanding work in the field of GBS research and treatment and his long standing support 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 schmidtfarm@xtra.co.nz. The next meeting of the group will be held on Thursday November 30th from 11 am onwards at "The Cheese Factory" Waharoa. This is a group Xmas luncheon, so please bring a $5 gift for exchange. Visitors most welcome to attend. Phone Meike 0273250369 or Chris 027 6113246.

The Hawkes Bay area have occasional get togethers: Contact Lil 06 8375696 or Shona 027 4469852/shonaz@nowmail.co.nz.

West Auckland Area “coffee and chat”. If you are interested in forming a group please contact Grant and Sharon Dixon 09 4731128 or email sharon@dixonz.nz, or Eileen 09 444 8382 or 0211133607 or eileenmagnajacobsen@hotmail.com. Next meeting will be at 35 De Havilland Road, Hobsonville, on November 19th from 2 pm onwards. New visitors most welcome to attend.

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.

Acknowledgements

We would like to acknowledge the support of our main sponsors:NZ Lotteries logo.

Ara Lodge logo.