A post from Clare Stuart, ATSS Project Manager
I am grateful to be attending this event and excited to bring back knowledge, ideas and inspiration to enhance the work of ATSS for the benefit of TSC families across Australia and New Zealand.
The TSC World Conference being held in Washington DC, is put together by our USA sister organisation, the TS Alliance. Although it is called the world conference, we understand that for the vast majority of Australian families, attending an event like this is not feasible. ATSS works hard to ensure we have conference style events in Australia and New Zealand that can be accessed by more families. The information I gather at the conference will inform my work in planning for these events. I’ll be discussing future events with several international speakers while I am there – we’re in the early days of planning a Brisbane event later this year, New Zealand in November and a larger meeting in Sydney in late 2015.
I am honoured to co-chair the TSC International working group, and this group will meet the day before the conference. We’ll be discussing plans for TSC Global Awareness Day 2015, promotion of the Consensus Conference Guidelines for TSC and strengthening the TSC International network.
The conference is also exciting as it will be the first time results from the largest clinical trial into Topical Rapamycin for treatment of facial angiofibromas will be presented. This is the multi-site trial that Sydney Children’s Hospital have been participating in with funding from ATSS. This is an exciting milestone for this research. In addition, we will be working on how to ensure the treatment is accessible and affordable in the long term in Australia and New Zealand.
The agenda for the conference is so comprehensive that it will have a large influence on the next revision of our medical information pages. TSC research is progressing quite quickly, meaning that although most of our information pages are only 2 years old, it is already time to refresh them. We plan to start publishing revisions during late 2014, ensuring that we continue to provide accurate, balanced and localised TSC information – all reviewed by medical professionals.
TS Alliance have announced that the majority of the conference sessions will be video recorded. This is fantastic and I hope that many TSC families in Australia and New Zealand can access these. I will provide a short summary of the sessions I attend to help you choose which recordings to view.
What else do you think should be on my agenda in DC?