Thank you to everyone who completed our survey.  

The aim of this survey was to find out more about you, our TSC community. We had an excellent response and your feedback will help our planning for 2020.   In particular we will aim to:

  • increase the availability of information through digital and online events such as webinars and podcasts;
  • better publicise our face-to-face events and increase accessibility to everyone across the country;
  • enhance our TSC health professionals network with additional GPs and specialists around Australia;
  • make sure our events include the topics you have said are of most interest to you, including strategies to manage challenging behavior and anxiety, research projects, treatment options for epilepsy and mTOR inhibitors.

For those who are interested, a summary of the survey responses is provided below.


Survey responses TSA Survey 2019

Finding TSA  

Most people first heard about TSA either from a health professional, through an internet search or via Facebook. 

TSA services  

People who had experienced a TSA activity in the past 12 months – be it Reach Out, an education event, the TS Information Service or a fundraising event – rated them highly.  

Reach Out

Around 80% of people replying to the survey were aware of Reach Out, our regular magazine, with almost all of those who know Reach Out rating it Good, Very Good or Excellent.  


People rated the following as Good, Very Good or Excellent: 

  • TSA’s Website – 69%
  • TSA’s Facebook page – 71%
  • Facebook Discussion Group – 64%
  • Monthly enewsletters – 65%


Less than half of people had attended a face-to-face education event but the vast majority of those who had attended an event felt attendance was worthwhile.

Nearly 80% of people completing the survey said they would be interested in attending a face-to-face education event.  

80% of people completing the survey also said they would be interested in accessing more online/digital events about TSC, eg, webinars and podcasts.  

TSC Topics

There was a pretty even spread in proposed topics of interest, with the following being rated as being of significant interest:

  • strategies to manage challenging behavior;
  • learning about research projects;
  • managing anxiety;
  • treatment options for epilepsy;
  • mTOR inhibitors – especially everolimus.


Geographical remoteness for those not living in a major city was mentioned as an issue.


In terms of charity giving, most people said they made one-off donations, donated to friends participating in charity/community events and  that they attended smaller events like morning teas. 

A third of people said that if they were to donate to TSA they would be happy for TSA to decide how to use the funds with almost the same number saying they like their donations to fund research to find a cure.  

Health Professionals

We also asked for information to grow our network of TSC health professionals, so that people affected by TSC can, where possible, get access to health professionals with TSC experience and expertise and so that we can keep those professionals connected with TSA and with each other.  Via this year’s survey TSA collected the names of 12 GPs people affected by TSC would recommend to other people and 43 names of specialists not currently in its database.   Once we have permission from these health professionals, we will be adding their details to our database. 


MANY THANKS once again to everyone who provided this valuable feedback to us.  We are always pleased to hear from you.  If you have further feedback at any time, please do get in touch with us by emailing [email protected]