Meniere's Disease NSW Support Group

Ménière’s Support Group of NSW Inc.
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The NSW Support Group Story So Far...

At a small gathering in the lounge room of Dr. and Mrs. George Wilson AM of Kogarah Bay, a suburb of Sydney, New South Wales, Australia, on the 2nd May 1992, a steering committee was appointed to launch the NSW Meniere's Support Group.

It seems a long time since that meeting, yet, on the other hand, it seems to have been no time at all to get to this point in time where we have a group of over 1100 members which holds four large public meetings a year, publishes a regular newsletter, “The Balancer”, four times a year, maintains contact with associated organisations around Australia and internationally and, most importantly, supports and counsels people with Meniere's disease day in and day out!

The group was formally incorporated in New South Wales on the 5th January 1994. As you can see from the dates it took quite some time to get from the idea to the action. Questions of whether to amalgamate with other associations or to include other vestibular disorders had to be carefully considered, rules made, insurance taken out and government registration applied for.

The group is proud of the fact it has been able to remain solvent without any financial help from government. This has come about through membership fees, subscriptions, donations, raffles and sponsorship.

We maintain contact and exchange newsletters with many associated groups, which includes Meniere's groups in Victoria in Australia and the United Kingdom, and the Vestibular Disorders Association in the USA. Other groups that we keep in contact with include the Australian Tinnitus Association, Self Help for Hard of Hearing in Australia, Better Hearing Australia, Acoustic Neuroma Association and Cochlear Implant Club & Advisory Association.

We are members of Deafness Forum Ltd, which is the national peak body for all deaf and hearing impaired. We are also members of the Deafness Council of NSW, which deals with NSW state issues. We are represented on that committee by one of our committee members.

We publish a set of nine brochures dealing with the various aspects of Meniere's disease. (Details of these brochures can be found on the “For Sale” page of this website.) This has been a very exciting project and has had the full support of the medical profession. The text for the brochures was written by several Sydney Meniere's experts who are attached to St. Vincent’s Hospital, Darlinghurst and Royal Prince Alfred Hospital, Camperdown. These are two of the largest teaching hospitals in Sydney and Australia.

Another project to increase awareness of Meniere's has resulted in the production of the video “Dizzy Terror”, many copies of which have been distributed in NSW and Victoria.

This was a good example of cooperation between state Meniere's support organisations in different States of Australia, as was the production of the Meniere's Help Card. This is the size of a credit card and contains a brief description of Meniere's and a space for writing telephone details of a friend or family member, for contact in the case of an attack. The card has been distributed to all members of support groups in Australia. Having this card available can prevent strangers from assuming one’s unstable condition is life-threatening and calling an ambulance or even worse, assuming that one’s condition is due to drunkenness, and calling the police!

The Meniere's Support Group of NSW (MSGNSW) is proud to have established, after a lot of planning, the Meniere's Research Fund, which has the aim of improving our knowledge and treatment of Meniere's disease. You can read more information about this exciting development by clicking on the link on the left.

Another significant project was the mail out of 7,000 envelopes of material on Meniere's to all the GP’s in NSW, to increase doctors’ awareness of the disorder.

In 2006 we mailed educational material on Meniere's to 2,000 GP's in country and regional Queensland.

In 2007 we mailed informational material to all ENT specialists in NSW, ACT, QLD, and NT, together with a survey that asked them if they saw Meniere's patients. We now have a database of ENTs, so that we can advise any of our members (foe example, if they are moving to a new area) of the closest ENT who has indicated that he or she is interested in seeing Meniere's patients.

Anyone interested to learn more about Meniere's disease and keep up with the latest news is welcome to join our group. In the navigation bar on the left, you will find a link to our Membership Application that can be printed for your use, or please telephone our Membership Secretary or our Treasurer (see our Contacts page).

The Meniere's Support Group of NSW has members from all over Australia, but we concentrate our efforts on NSW, ACT, QLD and NT. (Those living in other states who are not yet members of a support group may prefer to contact the Meniere's Support Group of Victoria – we have provided a link to their website at the top of our "Links" page.)

We hope your visit to our MSGNSW website will be useful to you in your endeavours to learn more about this medical condition, and how to manage it.

Let us hope that in the near future researchers are able to make a breakthrough in their examination of the underlying mechanisms of Meniere's, their search for the causes of the disorder, and of course, their search for a definitive cure, or a method of preventing it. Groups like ours will be doing our utmost to help make this happen.