The Australasian Tuberous Sclerosis Society

In preparation for the 30th Anniversary of the foundation of the Australasian Tuberous Sclerosis Society in 2011, the ATSS Committee has undertaken a review of the Articles of Association and produced a new Constitution for ATSS. Adoption of this Constitution will be put to a vote at the Annual General Meeting of ATSS in August.

ATSS has been contacted by Dr Kate Riney, paediatric neurologist from Brisbane’s Mater Children’s Hospital to discuss the improved level of care and service provided to families with young TSC affected children in the Brisbane area.

Dr Riney is planning to hold TSC Clinic days every six months where patients will have the opportunity to consult a number of medical professionals. These days will be held to offer an improved level of care to families and maximise the benefits of a team approach to the medical care provided to TSC affected children.

This should provide an increased level of care for families living in the Brisbane area who access their medical care at the Mater. For more information, please contact:

Dr Kate Riney, Mater Health Services, (07) 3163 1697

Dr John Lawson Staff Specialist, Department of Neurology ,Sydney Children’s Hospital Randwick is conducting a clinical study of a new investigational treatment for individuals with Tuberous Sclerosis Complex related Subependymal Giant Cell Astrocytomas (SEGAs). He is currently seeking referrals of appropriate participants for enrolment into this study.

Click on 'Read More' for more information.

Windows is an anthonology of poems written by Adam Cope. Adam has TSC. Illustrations by Adam and his father accompany the poems.

Buy a copy through the ATSS website, using the button provided, and ATSS will recieve $4 from every copy sold.

To find out more about the book and about Adam, click on 'Read more' or see Adams Stories on the ABC site.

ATSS is raising funds to research the development of a Rapamycin Topical Cream that will aim to reduce the growths (angiofibromas) associated with Tuberous Sclerosis Complex on the face. This would eliminate the need for painful laser surgery.

The fundraising target is $200,000, of which $80,000 has been raised so far. If you would like to help ATSS reach this fundraising goal you can donate here. All donations $2 and over are tax deductible.

To find out more about this project, click 'Read More'.