The Australasian Tuberous Sclerosis Society

The aims of The Australasian Tuberous Sclerosis Society are:

• Supporting people with TS and their families or carers, sharing problems and giving information.
• Providing education, publicity and information to promote an understanding and awareness of the problems encountered by the condition.
• Promoting fund raising to support research into the causes and management of TS

The Australasian Tuberous Sclerosis Society (ATSS) was formed in 1982 by Lynn Wilson, a TSC affected person. ATSS was established to promote a greater understanding of the condition and provide mutual support for affected families.

When doctors make a diagnosis of TSC it comes as an enormous shock to the family. Most people have never heard of the condition and they feel bewildered, isolated and often devastated. ATSS provides support through information and contact with other families affected
by TSC. ATSS members include hundreds of families, including some from overseas, in addition to many interested professionals from the medical, caring and education fields.

ATSS is a founding member association of Tuberous Sclerosis International (TSI).

Activities and Services

Information and Support

ATSS provides accurate and up-to-date information about Tuberous Sclerosis. ATSS is run entirely by volunteers, many of whom deal with TSC on a daily basis. Some are affected themselves, and many have a family member or close friend with TSC. General and
specific brochures are available.

Journal

Reach Out is published twice a year and offers an opportunity for its members to share news, information, experiences and opinions. It contains updates on research, treatment and management of TSC.

Website

The ATSS website provides more information about Tuberous Sclerosis and the Australasian Tuberous Sclerosis Society. Included are stories from people affected by TSC and updates on ATSS events and TSC research. Links to other organisations which offer support and information are provided.

Regional Representitives

Much of Australia is covered by a network of regional representatives: members with personal experience of TSC who offer local support. From time to time speakers are invited to address local groups and at other times more informal social events are arranged.

Family Conference

The annual Family Conference allows families to meet and share their experiences of TSC. Members, friends and professionals are invited to hear specialists talk about TSC and associated topics. The Society’s Annual General Meeting (AGM) is always held during the Family Conference.

Publicity and Fundraising

ATSS aims to raise the general awareness and understanding of the condition through publicity. For example, an annual lecture to medical students at The University of NSW attended by a TSC family gives future doctors a first hand experience of the condition.

ATSS receives no ongoing funding relying on donations from members for operating costs. ATSS also receives support for specific projects from corporate fundraisers and holds its own fundraising events.

Research

Research Projects

ATSS established an education and research fund in 1990 so that research projects could be funded where appropriate. Major research programs are underway in North America and Europe.

Tissue

Scientists researching TSC are grateful for TSC tissue made available through routine surgical procedures. Blood samples are also welcome for research purposes.

Further Information

Contact ATSS for more information.
Annual Reports and the minutes from quarterly committee meetings are published here.