Lizzie’s Lunch is a fundraising event held in 2014 that brought together the talents and passions of the members of the Inner West Mums facebook group. Clare Stuart is Lizzie’s older sister and a member of this group.
Lizzie was a vibrant young girl with a cheeky sense of humour. She lived with Tuberous Sclerosis (TSC) and associated polycystic kidney disease that ended her life in 2010. In July 2014, Lizzie would have been 30 years old.
Lizzie’s Lunch 2014 raised more than $5,000 for TSA. We look forward to hosting Lizzie’s lunch again in 2015.
TSC causes benign tumours to grow in the various organs of the body, including the brain, heart, kidneys, skin and lungs. Although there is a spectrum of severity and each individual case is different, common symptoms include difficult to control epilepsy, learning and intellectual disabilities, autism, mental health challenges, kidney disease and disfiguring facial growths.
When the required medical, educational and social support is available, TSC can be well managed and families can thrive despite this diagnosis. However for many families, especially those living outside of the major Australian cities, this is not the case. They are unable to see medical specialists with knowledge of the disease. They are unable to find appropriate education support for their child. They are unable to access psychological services or respite.
ATSS supports the families living all over Australia and New Zealand living with TSC. The volunteers that run ATSS know first hand the devastation that a diagnosis of TSC can bring to a family. Their goal this year is to raise enough money to provide the first ever TSC Advisor.
A TSC Advisor will empower families through support, information and connections.[quote float=”right”]When I make a new diagnosis of Tuberous Sclerosis, we sit with the families for an hour or so, and then they go home. To have someone who they can call and who can fill in all those details for the family and provide support would be an enormous benefit for them. — John Lawson, Paediatric Neurologist at The Sydney Children’s Hospital and Medical Advisor to ATSS[/blockquote]
This new service will be modelled on the successful services provided by the Tuberous Sclerosis Association (TSA) in the United Kingdom and informed by local examples offered by other patient organisations
The TSC Advisor will provide:
- an emotional ‘soft landing’ for families that have been given a diagnosis of Tuberous Sclerosis;
- accurate and up to date information about Tuberous Sclerosis, including prognosis, recommended surveillance, and available treatments;
- connections to other services that the family may require, such as financial support, specialist medical services and disability support services.
Our goal is to raise $30,000 for Lizzie’s 30th birthday. If we can do this, a TSC Advisor can start helping families in 2015.
As this is the inaugural Lizzie’s Lunch, we can work with interested members to shape the event.
Can you help with:
- Businesses to donate their products or services as raffle or auction items
- Corporate Sponsors
- Volunteers with some time for prepare for the event
- Most importantly, people to attend the first ever Lizzie’s Lunch – Buy your ticket now
Email email@example.com to get involved. Or call Clare on 0410 685 181.
The lunch will include auction items, activities and prizes suitable for women, particularly mothers living in Sydney’s Inner West.
We think the Dads are best placed looking after the kids while the Mums get a nice lunch out!
However, there will be some men there (including Lizzie’s Dad, Ross), and your partners are more than welcome to attend.