Report on the Inaugural Conference of the New Zealand GBS Support Group 25-27 April 2003
By Bob Stothart
The first national GBS conference has been and gone and feedback from those attending has been generally favourable. Planning began two years before the event and it really did take that long to get everything in place. We thought that we would be doing well if we got about 50 people to attend and in the event close to 140 were involved. They came from all over New Zealand, from Kaitaia to Invercargill and all places in between. There were GBS people, CIDP people, Miller Fisher syndrome people, caregivers, family and supporters, including people from kindred organisations.
Many new friendships were made and there was much swapping of personal stories with people who shared a unique, personal understanding of this frustrating and perplexing neurological condition. We all left I’m sure, with a deeper understanding and a shared determination to help each other.
We needed quite an amount of sponsorship so we chased international drug companies (Pfiser, CSL, GlaxoKlineSmith) as well as Lotteries, Massey University, Enable New Zealand and the Neurological Foundation. We received a huge boost from the American GBS Group helping with most of Dr Gareth Parry’s fare. Air New Zealand chipped in at the last moment and Taranaki Savings Bank supplied folders. We also received assistance to get a keyboard for the reception and were provided with wheelchairs free for the duration of the conference. The Wellington Division of the Cancer Society also helped with volunteers. Without this generous level of support we could not have run the conference.
We had hoped that Annette King, Minister of Health would speak at the reception but at the last moment she was unable to do this. Her substitute was Steve Chadwick, MP for Rotorua (and Chair of the Health Select Committee) who spoke with great sincerity as her sister is currently in ICU at Melbourne Hospital with GBS! Steve attended the whole conference and we were delighted to have her ongoing support.
The programme had a little bit of everything, a smorgasboard you might say. A bit of history, some up to the minute neurological information, some personal accounts of coping with GBS and CIDP, a specific legal case relating to GBS, an account of GBS in China, some physiotherapy and some feedback on psychosocial research. An interactive panel of experts rounded out a full day of presentations. The following morning about 25 people attended the annual general meeting of the trust indicating a strong interest in the workings of the support network and the trust.
From an organisational point of view the programme ran to time, the presentations were varied, interesting and well received and the attendance exceeded our wildest expectations. As with all events of this nature we learned a lot but more significantly we learned about what to offer at the next conference and planning has already begun. This not-to-be-missed event will be held in 2005 (start saving now), probably over Anzac weekend but there will be more information about this as the programme is arranged.
The conference was a huge undertaking and many people played a role in its success. From my point of view as the organiser it was worth every ounce of effort and I extend thanks to everyone who contributed time, ideas and energy to making the conference happen and I am already looking forward to the next one. See you there.
The presentations made at the conference have been published in a proceedings booklet and are available from Jenny Murray at $5 per copy.