In 1983 whilst sitting quietly watching TV, Anne Stewart, then 42, had her first, sudden and frightening attack of Meniere’s Disease.
With no cure, Anne was soon aware of how little help was available and she found Doctors often knew little or nothing about the condition. Sufferers were left to fend for themselves.
In during 1992-1994, with the help of her husband Malcolm and Dr. George Wilson (also a sufferer), Anne founded the Meniere’s Support Group Inc which became the Meniere’s Support Group of NSW Inc (MSGNSW) and she remained as Secretary/co-ordinator for 11 years.
The MSGNSW was a not for profit organisation run by volunteers, with over 1,100 members. The Committee members were intimately connected with Meniere’s sufferers and their experience was invaluable when helping and advising other sufferers.
Information was disseminated through a quarterly magazine, ’The Balancer’. Committee members were always available by phone to help, reassure or advise. Financing came from members’ annual subscriptions, raffles, Christmas cards sales and (generally modest) donations.
Support was offered to NSW, Queensland and Northern Territory sufferers from the MSGNSW. Victorian, South Australian, Tasmanian and West Australian support came from MSG Victoria, a sister organisation. Despite the volunteer work assisting sufferers, it seemed no one was tackling the medical problem itself.
In January 2001, MSGNSW embarked on the possibility of initiating dedicated Meniere’s Disease research in Australia, an early ambition of Malcolm. This followed a review of a paper by Bruce Kirkpatrick. A steering committee was formed consisting of Malcolm and Anne Stewart; Professor Bill Gibson, Dr. George Wilson and Bruce Kirkpatrick. Professor Gibson then approached Professor Stephen Leeder, Dean of the Faculty of Medicine at Sydney University, for suggestions how a Research Foundation could be formed.
Professor Leeder’s suggestions were followed up with the late Professor John Young, Pro-Vice-Chancellor of the College of Health Sciences at the University of Sydney. Professor Young advised the most efficient and direct way was to form the Fund within the Medical Foundation.
In September 2001, Mr. Peter Burrows, President of the Medical Foundation at the University of Sydney informed MSGNSW the Fund was approved. In March 2002, MSGNSW authourised a subcommittee to raise money for the Fund, using the tax deductibility status of MSGNSW for encouraging donations.
By late 2005, enough money was raised to support a 3 year Fellowship for a PhD to be trained in inner ear research techniques at Professor Alec Salt’s Department of Otolaryngology at Washington University, USA. Daniel Brown from WA’s Perth University was selected.
Dr. Daniel Brown commenced the American component of the research program in February 2007 and in January 2009 became the Fund’s founding principal researcher and set up the world’s first Meniere’s Research Laboratory at the Brain and Mind Institute in Sydney, Australia with access to vestibular and hearing expertise and patients from nearby teaching hospital and diagnostic facilities.