Let's get talking about TSC
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May 15th, 2012 is the first ever Global Awareness Day for Tuberous Sclerosis Complex (TSC).

TSC organisations around the world are using this day to raise awareness in their local communities of Tuberous Sclerosis. TSC affected families are encouraged to organise an event in their community, or some local media coverage to spread the word about TSC. Awareness is one way to reduce the isolation felt by many families with TSC and can be the first step in improving care and encouraging research towards a cure for TSC.

ATSS shared a different fact each day leading up to May 15th. Some of the TSC facts that we shared in the days leading up to May 15th incuded:

  • Somewhere in the world, a child is born with TSC every 20 minutes.
  • It is estimated that TSC affects 1 in 6,000 births.
  • TSC is the leading genetic cause of Epilepsy & Autism.
  • More than 1 million people worldwide have TSC.
  • There is no cure for TSC.

    • Click on 'Read more' to see the rest of the facts.

    Read more...
     
    Brisbane 'Meet the expert' night

    This information evening for families affected by Tuberous Sclerosis will include international TSC experts that will be in Brisbane for the International Child Neurology Congress. Topics will include an update on the clinical trials for new medicines for TSC and topical treatments for angiofibromas. There will also be plenty of time to ask questions and meet other families affected by TSC.

    Thursday, 31st May, 6-9pm

    Rooms M7+8, Brisbane Convention and Exhibition Centre

    Registration is $40 per person. This covers the cost of a light supper.

    Please register online, or print and send the registration form.

     
    2012 Melbourne Conference

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    The 2012 ATSS Conference will be held at the Royal Children's Hospital in Melbourne on 2nd June, 8:30am until 4:30pm. This one day event will include international and local TSC experts sharing their knowledge of the best practices in surveillence and treatment of TSC. The conference is a unique experience for people with TSC, their families, educators and health professionals.

    More information

    Draft programme

    Online registration

    Registration form to print and send.

     
    Order the DVD from the 2011 Family Conference

    ImageThree 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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