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TSC Connect: Brisbane Saturday 25 May 2019

Category: Events, TSA News | 0

You are invited to join TSA at our very first Connect event for adults living with TSC.  

The event will include TSC expert speakers, a chance to meet and connect with others living with TSC and an opportunity to discuss what further support you’d like. An informal, social dinner will be held nearby on Saturday 25 May from 6:30pm. 

When:  Saturday 25 May 2019Registration from 10.30am for a 11.00am start on Saturday

Where:  Translational Research Institute, 37 Kent Street, Woolloongabba QLD 4102

Recommended Accommodation:  Oaks Hotel, Woolloongabba QLD 4102 

Registration is now open.  Registration is $40 and will cover the cost of catering for the event.  Please contact us if costs are a barrier to your attendance. 

Government grant funding is available for adults with TSC to attend the meeting, along with a support person if required. Please see below for more information.  

Register for TSC Connect now

Registration is $40 and will cover the cost of catering for the event. Please contact us if costs are a barrier to your attendance. 

What will be discussed at the event?

The event is a chance to meet and connect with other adults living with TSC and also learn more about TSC from expert health professionals. In addition, there will be time to share stories, resources and contribute ideas to the future work of TSA. 

The program includes:

Genetics of TSCMegan Higgins, Clinical Geneticist, Genetic Health Queensland 

  • an overview of the clinical guidelines
  • genetic testing options  
  • Q&A with Megan

The kidneys and TSCNikky Isbel, Consultant Nephrologist, Princess Alexandra Hospital; Associate Professor Medicine, The University of Queensland  

  • How TSC can affect the kidneys 
  • Ways to keep your kidneys healthy 
  • Other manifestations of TSC such as colonic polyps, bone lesions, skin lesions, etc 
  • Q&A with Nikky

Connect peer group discussions 

  • sharing your diverse experiences of living with TSC  
  • exploring what supports you would like and what your hopes for this Connect group as a peer support and/or social network
I get all my information about TSC from my doctors and from the internet. Why should I attend?

The event is a chance to meet and connect others who are living with TSC. These connections can be useful when you face future challenges of TSC. 

We’re yet to hear from an attendee at one of our educational events that regrets coming along. If you’ve never been to a tuberous sclerosis event before, we encourage you to try this year.  

The day will also provide opportunities to hear from TSC specialist doctors and obtain a lot of up to date information all in one place. 

How long does the event go for?

The event will start at 11am on Saturday.  On Saturday evening there will be an informal dinner to allow people to meet others in a relaxed and social setting if they want to.  

Can I get financial assistance to attend the event?

TSA is a recipient of funding from the Australian Government to assist adults with tuberous sclerosis complex to attend this meeting along with a support person if required 

The grant can be used to fund: 

  • Registration fees
  • Travel such as flights, ground transport to and from an airport, coach travel and fuel expenses for private car journeys 
  • Accommodation for up to two nights at Oaks Hotel, Woolloongabba QLD 4102with members of the same family sharing (TSA will book this accommodation)

To apply for funding, please email jackie.gambrell@tsa.org.au and include an estimate of your costs.  We will reply within a few days to confirm the amount and success of your application. Funding will be awarded on a first come, first served basis until the grant has been fully allocated.

Please work with us to minimise costs by choosing the lowest cost options and staying with family and friends if possible.  

If your funding needs fall outside the above, please contact us to confirm if these can be covered. 

The grants will be paid by bank transfer no later than Friday 31 May. Receipts must be submitted at the conference. 

I am not from Brisbane, where should I stay?

We have made a group booking at the Oaks Hotel, Woolloongabba QLD 4102, as it is only a short walk from the venue.  

If you are receiving a grant, we will book your accommodation for you. If you are not receiving a grant and want to stay at the Oaks, please contact us for more information.  Email jackie.gambrell@tsa.org.au

Can children attend?

The event is not suitable for children and no childcare will be provided.

Can I bring my family members or other interested people?

Absolutely. Although this  is primarily a peer support event for those with TSC, we know that many people are involved in supporting a person with TSC and we welcome anyone who would like to participate in the event.

I am new to TSC. I am not sure if I want to meet others face to face

This is a common feeling. Coming to an event can be daunting. We’d love a chance to talk to you about this to see if we can help with your fears.

The people who attend our TSC education events are overwhelmingly welcoming and friendly. TSC affects everyone in different ways and people have different levels of knowledge about TSC; we remind each speaker of this to ensure there is something useful for everyone in each session.  If the meeting is emotionally overwhelming, we encourage you to take time out of the sessions and to talk to one of the TSA staff if you need to.