Home | About | Newsletters | INvoice
Dear Members,
As inaugural President of the Council of GBS/CIDP Support Groups of Australia it gives me great pleasure to write this report.
The Council or its concept was born out of a need to unite State Support Groups and to have a National Body to lobby the Federal Government. The Council is also well placed to assist the development of support groups in those States that have not yet formed support groups.
Our first preparatory meeting was held in February 1997 after which office bearers were nominated in the April meeting. In September'97 a constitution was born and thereafter three further meetings were held using Conferlink (telephone hookup).
Our main task was to promote National GBS/CIDP Awareness Day 1st June 1998. Council office bearers and State members as well as CSL representatives, worked very hard in Victoria, South Australia, Tasmania and New South Wales to promote the cause of GBS/CIDP Awareness with JOHN STANLEY scoring a great "hit" in Tasmania (see p.2). Much was learned and next year will be even more successful.
As President, I have been mainly involved in raising awareness of the need for constant and adequate availability of Intragam, needed for the intravenous treatment for GBS and CIDP. I have worked with CSL to write to the National Red Cross and Federal politicians to achieve this aim. The wheels are turning slowly but they are turning.
I would like to thank Vice-President HEATHER TRENORDEN for her valuable contributions in drawing up our constitution and supplying an educational video "Challenges & Choices - Exploring the non-physical issues of GBS & CIDP", not to mention her vast experience and common sense suggestions in setting up the Council. Secondly I want to thank JOHN STANLEY who has set up the Tasmanian GBS and CIDP Support Group and is working valiantly and very successfully in supporting sufferers in that State. Many thanks to CATHRYN HOPE from CSL for her continued support and encouragement and input to the meetings, not to mention the financial support from CSL without which we could not exist. Thanks also to WERNER FIEDLER CSL Marketing Manager who has helped me to understand the ins and outs of Intragam production. My thanks also go to JAMES & BETTY GERRAND who are and always have been the driving force behind the council. JAMES keeps his finger on the pulse through the Internet and is mainly responsible for editing this newsletter. BETTY is a tower of strength. Thanks also go to KEITH COLWILL whose enthusiasm and moral support is inspirational.
Last and not least I would like to thank Secretary/Treasurer MELVA BEHR without whom I would be lost. MELVA in her busy post has been facilitating the setting up of a support group in Queensland. Good on you, MELVA.
In conclusion, rest assured we will all continue working to develop the work of the Council until there are support groups in all States and the Northern Territory. We will continue to strive to ensure that GBS and CIDP sufferers have adequate medication and appropriate medical intervention, keeping in mind that all committee members and workers are offering their services voluntarily.
I believe the Council is a marvellous achievement.
BARBARA BURZAK-STEFANOWSKI, President.
On 3/11/98 Professor RON PENNY advised of a National Review of the Use and Supply of Intravenous Immunoglobulins. It is being carried out on behalf of the Australian Health Ministers' Advisory Council (AHMAC) and its Blood and Blood Products Committee by a Working Party of which Professor Penny is Chairman. "The time frame for the review is six months and the review is the direct outcome of concerns expressed by community groups that the amount of IVIG produced in Australia is insufficient for its current uses."
IVIG Patient Support Groups have been invited to submit their views in relation to the use and availability of IVIG to the Working Party. The IN Group of Victoria, stimulated by a current shortage of Intragam has already made its submission, 30/11/98 which is published in their December newsletter "INformation".
The Council will be making its submission with copies to Federal State Ministers of Health shortly.
A remarkably good video CHALLENGES AND CHOICES - Exploring the non-physical issues of GBS and CIDP is available from the SA Neurological Resource Centre, 23A King William Road, UNLEY SA 5061. Duration 27.5 minutes, price $30 ($35 inc post).
The video was produced by The School of Occupational Therapy, University of South Australia. A selection of patients tell of their psychological trauma and recovery.
Some forty members of the Victorian IN Group gave it their "thumbs up" when it was shown at their Winter Luncheon.
Some 80 past and present sufferers from GBS or CIDP have filled in the Questionnaire providing details of their experience so as to help or be helped.
The most helpful support for sufferers has proved to be finding someone if possible of similar age and sex who has recovered from a similar trauma and for that person to visit the new sufferer.
The Questionnaire used by The IN Group is based on the one introduced by the GBS Association of NSW.
Any person who would like to help or be helped who has yet to receive the Questionnaire form should contact either The IN Group or The GBS Association of NSW. (See addresses back page.)
Thanks, VILMA CLARKE, Wangaratta Vic, for supplying this article from "The Patient's Network" (Spring 1998)
John Stanley's Awareness Day successCorrespondence to Secretary, 3 Briarwood Court Sunbury Vic 3429 tel (03) 97408983
Mission Statement: To optimise the quality for people living with GBS and CIDP.
Aims:
To promote nationally the interests of people living with GBS/CIDP and to promote the establishment of services in order to assist them and their carers and families.
To assist, coordinate and further the efforts of the autonomous Member Organisations in the several States and Territories of Australia which assist people with GBS/CIDP and their carers.
To collect and disseminate information concerning the treatment of people living with GBS/CIDP.
To cooperate with Member Organisations in adopting every means possible to stimulate the expansion of facilities, programs and resources throughout Australia for the training of personnel in the treatment and education of people living with GBS/CIDP and their carers.
To encourage the interchange and dissemination of ideas, operational methods and research data, the arousing of interest and the development of awareness and an informed public opinion with the object of stimulating community action and other measures directed to the promotion of the welfare of people living with GBS/CIDP and their carers.
To establish and maintain relations with organisations throughout the world with the same or similar objectives.
To promote and support research into GBS/CIDP.
Generally to do such acts, matters and things as are incidental or conducive to the attainment of the aims of the Council.
To promote easy assess to anyone in Australia needing support.
Members of the Council
The Inflammatory Neuropathy Support Group of Victoria Inc.
The Neurological Resource Centre of South Australia Inc.
The GBS Support Group of Tasmania
Associate Members of the Council
The GBS Association of NSW Inc.
Office Bearers of the Council
President: BARBARA BURZAK-STEFANOWSKI
Vice-President: HEATHER TRENORDEN
Secretary/Treasurer: MELVA BEHR
Delegates to the Council
Victoria: BETTY GERRAND
JAMES GERRAND
Tasmania: JOHN STANLEY
Editor of the newsletter "INvoice": JAMES GERRAND
138B Princess Kew Vic 3101 tel (03)98536443 fax (03)98534150
email: ingroup@vicnet.net.au
Internet Home Pages
Guillain-Barre Syndrome Association of New South Wales Inc.
http://www.ozemail.com.au/~guillain/
Guillain-Barre Syndrome Foundation International
http://www.gbs.org/support/foundations/
Guillain-Barre Syndrome Support Group of the United Kingdom
http://www.users.globalnet.co.uk/~gbs/
The Inflammatory Neuropathy Support Group of Victoria Inc.
http://home.vicnet.net.au/~ingroup/
The Neurological Resource Centre of South Australia
http://www.span.com.au/nrc/