Special thanks to our guest speakers, the Cooper family for joining us and to Charlie and his dad Dominic for sharing their journey with TSC. It’s always such a privilege to hear first hand how TSA’s work directly benefits families like the Coopers. And to hear it directly from Charlie who has TSC himself was a real honour.
If you would like to support this event please make a donation below and save the date for the 10th Lizzie’s Lunch to be held on Sunday 25th June 2023.
About Lizzie and Lizzie’s Lunch
Lizzie Pinkerton was a vibrant young woman with a cheeky sense of humour. She lived with Tuberous Sclerosis (TSC) and associated polycystic kidney disease that ended her life in 2010. Sue Pinkerton (Lizzie’s Mum) and her family organise Lizzie’s Lunch each year to remember Lizzie and the impact of her life on all those who knew and loved her.
This event has raised more than $135,000 since its inception in 2014 making a huge difference to the information and support services that are available to people living with this devastating rare disease. If you’d like to know more about setting up and running an event like this, please read this article: Lizzie’s Lunch Reach Out October 2021
How can you help?
We’d love you to get involved with Lizzie’s Lunch. Here are some ideas for how you can help:
- Ask businesses to donate their products or services as raffle or auction items
- Do you have frequent flyer points that you could convert to a shopping voucher TSA could use as a prize? You could support us by trading in some of your points and donate vouchers to TSA
- Donate bottles of wine for the mystery wine wall
- Sponsor the event or help introduce us to a Corporate Sponsor
- Volunteer to help prepare for the event
- Most importantly, come along and enjoy the day.
Email [email protected] to get involved. Or call Kate on 0434 391 430.
$50 allows us to answer a single support or information request
Our TSC Information Service provides free advice to those affected by TSC. One call from a family about the importance of early diagnosis and intervention treatments and how to access them can change their child’s life.
$100 allows an individual with TSC or their carer to attend an information event
Our virtual and face to face events provide an opportunity for people affected by TSC to learn more about the disease and meet other people living with TSC. These connections can be life-changing and can help to reduce the sense of isolation.
$250 allows us to update one of our medical information pages
Our medical information pages are the only source of accurate TSC information tailored to the needs of TSC patients and their families in Australia. The significant achievements of TSC research mean that these information pages require regular revision.
Your support will help us continue to provide our trusted information and support services for free to everyone affected by TSC by:
- Maintaining this website, the only online source of accurate and up to date TSC information in Australia
- Publishing and printing our magazine Reach Out twice a year
- Providing a TSC Nurse service offering telehealth phone and email support
- Organising and hosting educational events online for everyone in Australia
- Advocating for improved services and treatment for families affected by TSC
- Ensuring TSC affected individuals have access to all the latest global research and advancements in TSC.
Our donors and supporters have enabled TSA to champion many life-changing projects in Australia including:
- Publishing a picture book to help children understand TSC
- Funding an Australian clinical trial into a new medicine for TSC skin tumours (angiofibromas)
- Creating New Diagnosis Parachute Packs for families receiving a new diagnosis of TSC
- Development of a SEALS Genetic Diagnostic Laboratory, the first laboratory in Australia to offer genetic testing for TSC
- Launching the In Safe Hands Education Resources to help teachers and educators understand how TSC may affect how a child learns.
- mTOR inhibitor medicines for TSC added to the PBS (Australian Pharmaceutical Benefits Scheme).TSA led the consumer advocacy project to help decision makers understand the impact this medicine can have on those living with TSC.
To find out more about how your dsupport make a difference, click here to read our latest annual report.
The vast majority of your contributions go directly to providing these important services and research. Much of our work is done by volunteers, working in their homes. This keeps our costs low, and ensures your money goes directly to support people living with TSC. Your support, however big or small, is greatly appreciated.