30 Higgs Road
Mapua 7005, Nelson
P.O. Box 21 Mapua 7048
The main function of the Group is to provide a contact point for newly diagnosed patients and to get information to a patient and the family or carers as soon as possible after diagnosis. It is in the initial stages of the illness that people are most frightened and concerned and when a visit from a recovered patient and information about the illness with its weird name is most valued. No one should suffer this illness alone. We inform through our Website, Brochures, Medical Advisory forum, Community Facebook forum, Conference and Hospital visits. Our group is here to help, provide advice and our experiences as a survivor of GBS. Our National Co-ordinator is available on the end of the phone or by Email to help.
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 or at home to give re-assurance and support to them and their carers and families. Contact the National Co-ordinator for details.
We take every opportunity to raise public awareness of this devastating illness that impacts one person in 30,000 in New Zealand – one of the highest rates in the world – that’s 100-120 people contracting GBS each year in this country.
Research into the causes and “triggers” that start the onset of GBS and its variants is actively being pursued in Europe and the USA and our Group aims to keep its members in touch with the latest developments in these important areas through its quarterly Newsletter, this website and our Facebook site and current topics are presented and discussed by members of our Medical Advisory Board and other experts at our Conferences.
Although our financial resources are small by comparison with other International Groups we do fund medical research within New Zealand in areas that are relevant to the illness.
All the officers of the Group are unpaid volunteers and we rely on donations from individuals and organisations to support our work. In this respect we wish to acknowledge the support of the ARA Lodge No. 348 Charitable Trust based in Auckland for their annual donation to assist in funding our administrative organisation.
In 1997 the late Jenny Murray wrote a letter to Woman’s day asking if anyone in New Zealand had experienced a similar medical condition that her sister Dulcie had just been diagnosed – Guillain Barre Syndrome. A couple of people responded including Terry Watton – our first President -who like others had contracted GBS. They decided there was a need to form a Support Network and by April 1998 the Group was formed. A Trust was established in 2001 with Sir William Birch – himself a GBS survivor – becoming the Group’s Patron and Jenny at the age of 46 acting as Secretary, Treasurer and the “go to” caring person for anyone suffering from or associated with GBS in New Zealand
Jenny was awarded the Queens Service Medal in 2003 in recognition of her work in the formation and operation of the Group and she remain closely involved in the running of the Group until her death in 2016.
With a revised and updated Trust Deed the Group became a Registered New Zealand Charity in 2008 and currently has over 200 registered members hailing from all parts of New Zealand.
In 2009 Dr Gareth Parry the Medical Advisor to the Group 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 of the Group. At Dr Parry’s suggestion a Medical Advisory Board was formed in 2012 and now includes some of the foremost medical experts in the GBS field in New Zealand.
To enhance the Group’s standing with Medical Professionals a formal procedure for approving Authorised Hospital Visitors was put in place in 2013 to ensure our members visiting GBS patients in Hospitals meet required standards of protocol and privacy. Some 30 members have now been so authorised and offer support and encouragement to GBS survivors and their families and carers around the country.
Our Patron is The Honourable Mrs Steve Chadwick. A former Associate Minister of Health in the 2007 Labour Government. After retiring from politics she was elected Mayor of Rotorua in 2013 and re-elected in 2016. Her sister Val, who lives in Australia, was seriously affected by GBS and continues to suffer from its ongoing after effects.