Who had the forethought and the resources to bring a GBS Support Group into a practical reality?
The answer rests initially with a group of concerned Neurologists, and others within the Departments of Neurology and Medicine, University of Sydney about mid 1990. Professor James G McLeod, plus the present Professors, John Pollard, and Patricia Armati, clinical sister Claudia Charlton, and Rhana Pike, who on behalf of the Neurology Department, attended to the initial day to day issues of setting up a viable Group in that early period. An awareness of a possible need for a support group arose after an airing of an ABC TV programme “Quantum” in 1989. Featuring a young lady who had GBS, documenting her symptoms and her journey towards her recovery. I actually saw this programme, becoming just one amongst the more than 50 correspondents recounting their own stories sent to the South Australian GBS team, who then had a voluntary GBS survivor to answer GBS related calls.
These letters spoke volumes, it was obvious a support group for GBS would help to heal emotionally if not physically, that in itself can be a positive step forward towards a good recovery.
The practicalities of setting up a support group can be daunting. In this aspect those first few years of GBS meetings were assisted and given personal support by the Professors, and the University, allowing the new committee time to gather their own abilities to structure a formal Incorporated GBS NSW Association. Incorporation was necessary to provide validity and funding support. Without that foundation, given by the Neurology Dept, without their assistance and support given in the early years of the Association, it would have been very difficult to get our organisation established and functioning, The Association has sincere respect and regard for the Professors, commending them, for their wider vision recognising as they did the extended emotional needs of GBS/CIDP persons and their families, as well from the medical aspect of appropriate treatment and research for the syndrome.
We cannot move mountains, however we can give them a gentle nudge.
The GBS Association NSW has continuing interaction and exchange of information, with the other incorporated GBS/CIDP group in Australia, the InGroup Victoria and several overseas Groups. GBS NSW is a Liaison Chapter of the GBS/CIDP Foundation International (USA); GBS.org.uk;- the Netherlands Group, Patricia Blomkwist-Markens. GBS/NSW webpage is linked to several Government Health sites, as well as the Better Health Channel (Victoria)