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 Three of the most popular speakers from the 2011 ATSS Family Conference can now be seen and heard in your living room! Order the DVD of the recordings from the recent Family Conference. The DVD comes complete with printed slides from the presentations.
The three speakers are:
- Dr Vicky Whittemore: From Genes to Therapies, describes the research on TSC completed already and future research directions that will take us closer to a cure. As one attendee wrote: "Wonderfully warm, insightful, intelligent and relevant"
- Dr Sean Kennedy: Kidney Involvement in TSC, provides an overview of the renal manifestations of Tuberous Sclerosis as well as recommended surveillence and treatment. Feedback for Sean included "Summarised very well and presentation was easy to understand".
- Dr Petrus de Vries: Behaviour, Learning and Psychological Aspects of TSC, disects these various aspects in a very entertaining and insightful lecture. And some, of many, glowing comments from a conference attendee "Very entertaining, informative, Petrus made something very complex easier to understand", "Very relevant to our intellectually normal son", "Worth the trip (to Sydney) for this session"
The DVD may also be useful for sharing with extended family, your child's teachers or other carers. For only $20, inlcuding postage within Australia and New Zealand. Order your copy today here. |
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Channel 9 is covering a story about Tuberous Sclerosis Complex (TSC) and Everolimus. It profiles Deb Duffy and her son Luke - Luke is taking Everolimus to treat his SEGA, a potentially life-threatening brain tumor caused by TSC.
If you watched this story and would like to help support families with TSC, please donate now or sign up to be a supporter of ATSS here. To find out more about TSC and see more stories of people affected, watch our DVD. |
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What a National Disability Insurance Scheme (NDIS) will mean for children and adults with Tuberous Sclerosis Complex and their families?
This summary has been written by Les Cope, whose son Adam has TSC. Read on for more information on what the NDIS is and what you can do to help.
While not everyone who has TSC has a disability, the whole TSC community can participate in this grass-roots campaign to help improve the services to all Australians with a disability, including those with TSC. |
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Read more...
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February 28 is Rare Disease Day, an international initiative by Rare Disease Europe. The aim of the day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives.
More specifically, in 2011, Rare Disease Day will seek to draw attention to the:
- Gaps in health that exist for rare disease patients between and within countries
- Gaps in health that exist for rare disease patients compared to others in society.
In Australia the day is being supported by organisations such as The Association for Genetics Support Australasia, The Steve Waugh Foundation and The Smile Foundation. Keep an eye out for flags in the Sydney CBD and media coverage of this awareness raising initiative.
To find out more about Rare Disease Day 2011, visit Rare Disease Day website or specific page for activities in Australia.
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