REGISTER NOW: Community Connect is taking place in Sydney on Saturday 23 March

Community Connect, Sydney

Saturday 23 March

An event for families, friends and carers of children and adults living with TSC (Tuberous Sclerosis Complex) and adults living with TSC.

About this event: Community Connect is a unique opportunity to hear from expert TSC health care professionals and have the opportunity to ask them your questions. It’s also a chance to meet people living with similar daily challenges and to share your thoughts and experiences. You can view the full program here.

Where: This national in person event will be held in the Colombo Building, University of New South Wales (UNSW), High Street, Randwick, Sydney.

When: Saturday 23 March 2024.

Time: Community Connect runs from 9.30am to 4.30pm.

Cost: AFT Pharmaceuticals has kindly and generously offered to provide financial support for this event. The subsidised registration fee for any family members, friends and carers who wish to attend is now just $25 per person. The full day event fee includes a light lunch and afternoon tea for all attendees.

Also, thanks to government sponsorship under the National Disability Conference Incentive (NDCI) grant program, this event is free for adults living with TSC and one person accompanying them to the event. Some financial assistance with travel costs and overnight accommodation may also be possible, particularly for adults living with TSC travelling from outside of Sydney to attend the event.

BUT, you must register to attend and places are limited. So, book your spot today. Register NOW! 

More information

Where and when

Colombo Building, UNSW, High Street, Randwick, Sydney

Saturday 23rd March 2024

Community Connect will run from 9.30am to 4.30pm.

For a map and more details about the venue, click here.

A light lunch and afternoon tea is included for all attendees. There will be time for questions, refreshment breaks and a chance to connect with other people living with similar challenges.

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What will be discussed?

The day will include presentations and discussion with expert TSC health care presentations, question presentations on living with TSC from members of our TSC Community and an opportunity to meet and connect with each other. There will be opportunities to ask questions and share experiences.

The morning will start with health care presentations that are relevant to anyone affected by TSC:

In the first session Dr Clara Chung will give an overview of the genetics of TSC – what causes it and what we know about the mTOR pathway.

This will be followed by an overview of the need for lifelong surveillance and monitoring of TSC – why is it necessary and how does it change over the life cycle of a person living with TSC?

After morning tea there the conference will split into two streams. You are welcome to attend whichever session you feel will benefit you most.

In Stream A we will discuss TSC-related epilepsy, management options and latest research. This session will likely be of most interest to families and carers of children living with TSC.

In Stream B we will look at how TSC can affect the kidneys. The focus will be particularly on the impact for people living with TSC as they enter adulthood and is likely to be of most interest to adults living with TSC and their carers.

After lunch you will again have the opportunity to choose which session you wish to attend.

In Stream A, Dr Vanessa Sarkozy will explain TAND (TSC-Associated Neuropsychiatriatic Disorder), how to use the TAND Checklist and pathways from concern to assessment.

In Stream B, we will hear about how TSC can affect the lungs, the signs and symptoms, diagnosis and how to manage life with LAM and other lung issues.

The remainder of the afternoon will include sharing your lived experiences and connecting with other people living with similar challenges. An afternoon tea will be served.

You can view the full program here.

Can I get financial assistance?

AFT Pharmaceuticals, the company working on TGA approval for topical rapamycin cream to treat angiofibromas, has kindly and generously offered to provide financial support for this event. The subsidised registration fee for any family members, friends and carers who wish to attend is just $25 per person.

AFT Pharma

Also, thanks to government sponsorship under that NDCI grant program, this event is free for adults living with TSC and one person accompanying them to the event. Some assistance with overnight accommodation and travel costs may also be possible, particularly for adults living with TSC who are travelling from outside of Sydney to attend the event.

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Simply tick the relevant box on the registration form.  You can also use this form to find out about support with travel and accommodation costs.

Can my adult friends and family members participate?

Absolutely. We know that many people are involved in supporting a person living with a health condition and we welcome anyone who would like to participate in the event.   

Can I bring my child living with TSC?

Unless your child is an adult who is able to participate at the event, then sorry but no, you cannot bring them as this is an education event and is unsuitable for children under 18 years. We ask that you please make appropriate arrangements for your child living with TSC to be cared for whilst you attend the event. There will NOT be child minding facilities at the event.

Who is organising and sponsoring this event?

Community Connect 2024 is hosted by TSA and supported by our amazing expert TSC health care professionals.

Community Connect funding for adults living with TSC has been made possible thanks to the generosity of the following sponsors:

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AFT Pharma

If you have any questions or need further information, please email [email protected]

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UNSW
UNSW, High Street, Randwick, Sydney

Some of the expert TSC health care professional speakers who will join us:

Denise Chan
Dr Denise Chan, Paediatric Neurologist
Deshan Sebaratnam
A/Professor Deshan Sebaratnam, Dermatologist
vanessa sarkozy
Dr Vanessa Sarkozy, Developmental and Behavioural Psychologist
Sean Kennedy
Dr Sean Kennedy, Nephrologist