Looking back

Mrs Marjorie Harrap is a founding member of MND NSW, having been actively involved in the Association since 1981. She is now a life member, and continues to work at the MND NSW Centre, Gladesville, one day per week as a volunteer. This article was published in the December 2007 edition of Forum, the newsletter of MND NSW.

"I think the organisation began in much the same way as other similar organisations have begun - a family member, relative or friend is diagnosed as having a rare or uncommon disease - information and literature is very difficult, almost impossible, to obtain - and the need for a support group becomes obvious.

In 1981, my husband Bill was diagnosed as having amyotrophic lateral sclerosis (ALS), the most common motor neurone disease, by Dr Brian Somerville at the Neurological Centre, Westmead. Bill was eager for information and, after answering some of his questions, Dr Somerville gave us some literature he had recently obtained from the ALS Society of America.

On one of our visits Dr Somerville mentioned his concern for the plight of people with MND and their carers and asked us how we felt about "getting something going" - a support group providing information, advice and possibly equipment.

And so we approached family and friends - we knew no one with MND at this time - and the Amyotrophic Lateral Sclerosis Society of Australia (renamed the Motor Neurone Disease Association of NSW Inc in May 1994) was formed on 9 December 1981 by a group of seven volunteers who became the management committee - Dr Dawn Thew, Don Thew, Colin and Denise Grundwell, Alex and Lynette Henderson and myself with Dr Somerville as our very active medical advisor.

Our aim was to provide emotional support and to disseminate information concerning specialised medical and paramedical services, equipment and other supportive measures available to people living with MND and to promote an interchange of ideas concerning patient management.

Volunteers served on the management committee, maintained the day-to-day running of the Association and organised meetings and workshops for people living with MND. In city and country areas they participated in all sorts of fundraising ventures - street stalls, concerts, balls, fun runs, raffles, bowls and card days - to support the work of the Association.

During the 80's the Association organised several very successful seminars and workshops. Important events included the 1982 'Seminar on ALS' when Eames Bishop (the then President of the ALS Society of America) was guest speaker. The Neurological Centre at Westmead was full to overflowing with about 200 people in attendance and the Association really 'took off'. In 1983 the seminar 'ALS and Research' brought together members and researchers for the first time.

The Association created a special account for research into MND and regularly set aside funds for this purpose. In 1986 a separate entity was created, the ALS Research Foundation (since renamed ALS - Motor Neurone Disease Research Institute Inc., and then the Motor Neurone Disease Research Institute of Australia). The funds raised in NSW for research were transferred to the new entity. Dawn Thew became the inaugural Honorary Chairperson of the Research Institute.

In 1989 Australian MND Associations came together for the first time. Although this meeting was organised and hosted by the NSW Association, it was held in Adelaide. There was a very worthwhile exchange of ideas and it was decided that the first National Awareness Week would be held from 1-8 April in 1990. In 1991 the Motor Neurone Disease Association of Australia was formed."

Marjorie Harrap