The Australian Sjogrens Syndrome Association Inc. was incorporated in Parramatta in 2001, although due to illness of the founder, the association did not commence trading until June 2004 in Mullumbimby, Northern NSW. The name of the founder and president is Ms Beverly Norton.

The Association was started by Beverly Norton who, in May 2000, was diagnosed with Sjogren's Neuropathy, a disease that Australian doctors knew very little about. Sjogren's (pronounced show-grins) syndrome is a chronic, autoimmune disorder in which the body's immune system mistakenly attacks its own moisture producing glands. The specific causes of Sjogren's syndrome are not known, but multiple factors are probably involved. These include genetics, viruses, hormones or a combination of all of these. It is critical that it is identified quickly and treated otherwise it can be fatal.

After 9 weeks in hospital, Ms Norton was released in a wheelchair and her daughter was advised that she would need constant care for the rest of her life. Ms Norton went on to being the only documented case in Australia with Sjogren's Neuropathy, which is the third stage of Sjogren's syndrome, and so her crusade began to make people and healthcare providers aware of the illness and the different stages.

An estimated 4 million Americans have Sjogren's syndrome. Nine out of ten are women. In Australia 5% of the population have this syndrome. When Sjogren's syndrome occurs alone, without the presence of another connective tissue disease, it is called primary Sjogren's. Diagnosis is not an easy task and is often missed since the symptoms of Sjogren's syndrome can mimic other diseases such as lupus, rheumatoid arthritis, chronic fatigue syndrome, fibromyalgia, multiple sclerosis and Alzheimer's disease.

While there is currently no cure for Sjogren's syndrome, early diagnosis and intervention can affect the course of the disease. With information and proper management, a comfortable lifestyle can be achieved for sufferers.

ORGANISATION OVERVIEW

Association Description

The Australian Sjogren's Syndrome Association Inc. (TASSA) is a non-profit Incorporated Association with charity status and registered for GST.

As there is no research undertaken in Australia, Ms Norton contacted the American Sjogren's Syndrome Foundation and became their representative in Australia. They sent out books, resources such as brochures, flyers and posters that could be used until TASSA could get their own sponsored.

The Association is set up to provide:

	Support, information and education to individuals, carers, and their family and friends suffering from any aspect of Sjogren's Syndrome;
	an awareness of the syndrome to healthcare providers, dentists, eye specialists, the general public and health care funds e.g. MBF and HCF;
	Funds for research into cause, prevention, treatment and cure of the disease and give individuals the education and coping mechanisms needed to deal with the disease on a daily basis;
	a clearing house for medical information and a recognised national advocate for people with Sjogren's Syndrome.

The Australian Sjogren's Syndrome Association Inc. (TASSA) Mission

To educate patients, carers and their families about Sjogren's Syndrome, to increase public and healthcare provider awareness of Sjogren's Syndrome, and to encourage research for new treatments and a cure.

To fulfill its mission the Association provides:

	The Australian Moisture Seekers Newsletter containing medical news, research updates (from the USA) and tips for daily living (annual dues include a monthly subscription);
	The new Sjogren's Syndrome Handbook, a guide for patients, carers and their healthcare providers on the many aspects of the illness;
	Representation to government health funds for the rights and needs of people with Sjogren's Syndrome;
	Regular updated lists of suitable products;
	Patient and healthcare professional speakers at support group meetings;
	Fundraising for the Institute of Research in Australia;
	Support group meetings held monthly;
	Telephone support;
	Website world of information on Sjogren's Syndrome. The website contains news on the latest research from USA, UK and New Zealand. Medical opportunities are highlighted, answers to medical questions, tips for daily living, coverage of association, activities and events: (website still under construction)
	Patient information packs containing:
	brochures about symptoms, treatments, and complications of Sjogren's Syndrome;
	a product directory featuring information on how to obtain products useful to Sjogren's Syndrome patients;
	discounts on educational materials and American Sjogren's Syndrome Foundation sponsored symposia and conferences on tapes and videos;
	access to promotional materials from manufacturers of over the counter products.

The membership dollars will help the Association to:

	bring Sjogren's Syndrome to National consciousness;
	increase awareness of Sjogren's Syndrome in the medical community;
	educate healthcare professionals about Sjogren's Syndrome;
	establish new support groups;
	recruit more volunteers;
	advocate on behalf of patients on issues such as access to speciality care and the right to choose providers;
	fight for adequate federal funding for biomedical research, especially for