All the Latest News

This is why we’re putting the call out to everyone who feels comfortable to share your experiences with TSC.

Congratulations to our friends at TSC Alliance whose concerted advocacy efforts have resulted in the US Congress approving US$8 million in funding for the Tuberous Sclerosis Complex Research Program (TSCRP) in fiscal year 2023. To date, US$113 million has been … Read More

The students at Stradbroke School in South Australia held casual day on the last day of term and students were encouraged to donate a gold coin TSA as one of their fellow students lives with TSC. They raised a whopping … Read More

In this issue we have an update on TSA’s office closure over the holidays and a thank you to Samuel’s school who held a gold coin day for TSA.

In this issue we have an update from our recent AGM and an big thank you to everyone who joined us for Comedy for a Cure 2022

In this issue we share our inaugural impact report, an invitation to join our working group focusing on health care for adults living with TSC and a thank you to our TSC heroes!

We are delighted to share Tuberous Sclerosis Australia’s (TSA’s) inaugural Impact Report for the 2021/2022 financial year

Congratulations to Phoebe Andrews who recently completed a school project on TSC.

Thank you to everyone who completed our TSA Survey 2022. We appreciate the time and effort you have put in to tell us what you think about the services we provide for the TSC Community in Australia. We will be … Read More

Register today to join our discussion about the health care care of adults living with TSC on Wednesday 14 September 2022 at 7pm AEST

Join us for a night of laughs and a chance to raise vital funds to help individuals and families impacted by TSC

In this issue we have all the information on how you can join us for a zoom discussion on the health care of adults living with TSC and we invite you to Comedy for a Cure 2022!

We’re putting the call out to our TSC community to share some photos of you or your loved ones who are impacted by TSC. Every photo submitted will put you in the draw to win a one year free TSA membership!

In this issue we have all the information on how to attend the virtual World TSC Conference, congratulate the winner of the Elizabeth Pinkerton Memorial Award Kathryn Santamaria, and you tell us how we can best help you by participating in our 2022 TSA Survey

The TSA Survey 2022 is now open. Just click the link or scan the QR code.  We would like EVERYONE in our TSC Community to please take a few minutes to complete our 2022 survey. Whether you’re a long-time supporter … Read More

TSA’s June enewsletter is now available

TSA’s May enewsletter is now available.

Being a health care professional is hard. The workload is demanding, the hours can be long and unpredictable, the conditions can be tough and each day can literally be filled with life and death. And yet, many of us have … Read More

In this issue of the TSA newsletter we update you on some changes in the TSA team and launch a new podcast for GPs.

Read all the latest news from TSA including how you can help be an advocate, where to download your copy of the latest TSC surveillance & management guidelines, upcoming events and more

Read all the latest news from TSA including details on our closure over the holidays, links to the presentations from our recent TAND+ event and more

If you are a carer for someone with TSC you may want to check out Carer Gateway who offers a free national support service to those who provide unpaid care to family and friends.

TSA’s October newsletter is now available for you to read online. In this months issue, read about our upcoming TAND+ conference, help us advocate for free abdominal MRIs and grab your tickets for Comedy for a Cure!

We are delighted to share Tuberous Sclerosis Australia’s Annual Report for 2020/2021. Thank you to everyone who has helped us to support people living with TSC. Your kindness and generosity greatly helps our work with and for the TSC community in Australia.

TSA’s September newsletter is now available for you to read online. In this months issue, you can find out about our upcoming Zoom education event and TAND+ conference, plus the winner of the Elizabeth Pinkerton Memorial Award.

TSA has been lucky enough to be awarded a grant to update this website. So we’d love to know what you think of our site and what you would like us to change or add. Also, if you’d be happy … Read More

Dying to Know Day is a campaign that encourages people to start conversations about death. It might be a bit uncomfortable at first, but discussing your own and your loved one’s choices around end of life is the best way … Read More

TSA’s July newsletter is now available to read online. In this months edition, you can learn more about TSA’s upcoming Zoom Education Event on ASD and ADHD, plus TSA has won a grant to upgrade its website – this is your chance to tell us what you would like us to change.

We’re looking for a digital communications assistant to support our website and social media communications. If you have 2-3 hours per week available, have an eye for detail and are a whizz with websites, Facebook and the like, then we’d … Read More

Back in 1981 Lynn Wilson sent a letter to New Idea calling for families living with Tuberous Sclerosis Complex to get in touch with her. Forty years later, the same magazine has featured the story of TSA’s founder. Thank you to New Idea for printing Lynn’s story and thank you to the many volunteers over so many years who have helped make sure that everyone in Australia living with TSC has someone and somewhere to turn to.

The Elizabeth Pinkerton Memorial award is given annually by Tuberous Sclerosis Australia to a health professional to recognise their efforts to improve the lives of TSC affected people and their families in Australia. Nominations for the 2021 Award close on … Read More

Our friends at TSC Europe have put together this video for the International TSC Community to raise awareness about Tuberous Sclerosis Complex. You might recognise a couple of familiar faces from our TSC Community here in Australia. Well done to … Read More

Tuberous Sclerosis Australia relies on memberships to provide our free information and support services to individuals and families affected by Tuberous Sclerosis Complex. Starting from just $35 per year you can become a member and make a difference too. Join today or renew your membership before 30 June.

The Elizabeth Pinkerton Memorial Award (EPMA) is given annually by Tuberous Sclerosis Australia to a health professional to recognise their efforts to improve the lives of TSC affected people and their families in Australia. We encourage families and individuals affected … Read More

Read all the latest news from TSA in our May e-newsletter.

Flinders University Medical School invites you to take part in new research into TSC. They are conducting a research project into how Tuberous Sclerosis patients and their carers are impacted by the disease, and how the medical system can best … Read More

The Elizabeth Pinkerton Memorial award is given annually by Tuberous Sclerosis Australia to a health professional to recognise their efforts to improve the lives of TSC affected people and their families in Australia. Nominations for the 2021 Award close on … Read More

Need help securing funding from the National Disability Insurance Scheme (NDIS)? Visit TSA’s latest information page which gives helpful information on how TSC families can get the best out of the NDIS, including the video from the recent Zoom Education Event on NDIS.

Read all the latest news in TSA’s April 2021 e-newsletter online now. In this issue, you’ll find information on our upcoming national TSC conference, how to nominate a TSC health professional for the EPMA award and more.

Thank you to the Chalk Family for hosting a launch of TSA’s latest information resources, ” In Safe Hands”. On Monday 29 March 2021 at Blackmans Bay Primary School, Tasmania a special school assembly was held in honour of Caleb Chalk who attends the school and lives with TSC.

The Elizabeth Pinkerton Memorial award is given annually by Tuberous Sclerosis Australia to a health professional to recognise their efforts to improve the lives of TSC affected people and their families in Australia. Nominations for the 2021 Award are now … Read More

Did you know the brain has a worry muscle? The more you exercise that worry muscle the bigger and stronger it gets! Science has proven mindfulness gives your happiness muscle a workout, not your worry muscle. So mindfulness can actually reduce anxiety. Louise Healy from Rare Voices Australia (RVA) hosted a terrific zoom education event for our TSC Community and below we have shared some of the resources Louise recommended.

Click here to read our March 2021 newsletter. In this issue:
– Registrations are now open for our Virtual TSC National Conference
– Get involved in TSA’s 40th anniversary celebrations
– In Safe Hands TSC educational resources for schools now available

TSA is delighted to share that thanks to the efforts of its sister organisation in the USA and its supporters, the US House and Senate has allocated US$8million in fiscal year 2021 for the Tuberous Sclerosis Complex Research Program (TSCRP). 

Click here to read all the latest TSC news in our new-look enewsletter February 2021 edition now available online.

Welcome to TSC talk with Kim which aims to share information about common issues our TSC Community reach out to our Nurse Service seeking help for. We hope that by anonymously sharing some of these questions and answers we can better inform you about some of the shared struggles our TSC Community may experience. 

To celebrate Rare Disease Day 2021 (28th February) the Genetic and Rare Disease Network (GaRDN) is running a Rare Kids Art Competition that embraces this year’s Rare Disease Day theme of ‘Many, Strong, Proud’. Ask your kids to draw or paint a self-portrait and get them to be creative, be bold, be unique and most of all be THEM!

After Anne Cregan’s recent presentation on legal planning during and after your lifetime, several participants asked whether Anne was able to recommend lawyers who specialise in this area.  Here is Anne’s response: In New South Wales, try Stephen Booth at Coleman … Read More

Have you got photos of your children in school uniform you could share with us? TSA is in the final stages of developing two new educational resources to help children with TSC during the schooling years. The first is to … Read More

If you would like a personalised care plan to help you or your loved one manage the complexities of TSC, please reach out to Kim, TSA’s Nurse to make an appointment.

Tuberous Sclerosis Complex International (TSCi) invites you to participate in a brief worldwide survey about accessing medications for tuberous sclerosis complex (TSC). The survey will take 5-10 minutes to complete. It is anonymous, your answers will not be linked to any information that … Read More

If you are a young adult aged 18-30 living with TSC in Australia or New Zealand we’d like to know if you’d be interested in meeting up online with other young adults also living with TSC?  If being part of … Read More

TSA is pleased to announce that Nova Young has been appointed as a new member of the committee and that Rob Haggett was appointed as Secretary.  Welcome Nova and thanks Rob! 

Dr Nicholas (Nick) Smith, Head of Neurology at the Women’s and Children’s Hospital in Adelaide, South Australia had been confirmed as the recipient of the 2020 Elizabeth Pinkerton Memorial Award.

TSA is proud to present our Annual Report for 2019-2020 which highlights how much we have achieved during this year of unprecedented challenges. Sincere thanks to you, our TSC Community. We couldn’t do it without you.

TSA’s AGM All members are invited to attend the Annual General Meeting (AGM) of Tuberous Sclerosis Australia Inc. which, in accordance with Fair Trading NSW COVID-19 guidelines, will be held via zoom on Sunday 11 October at 3pm. If you … Read More

TSA’s AGM All members are invited to attend the Annual General Meeting (AGM) of Tuberous Sclerosis Australia Inc. which, in accordance with Fair Trading NSW COVID-19 guidelines, will be held via zoom on Sunday 11 October at 3pm. If you … Read More

Living with TSC is not easy and sometimes you can feel very isolated and alone.  Of course, this isn’t being helped by the pandemic, social distancing and lock downs. Please know that Kim, TSA’s nurse, is always available to talk to. … Read More

Nominations for the 2020 Elizabeth Pinkerton Memorial Award are closing soon. We encourage families and individuals affected by TSC who would like to show their appreciation of a particular health professional to make a nomination.  Nominations must be submitted by 31 July 2020.

We know that during pandemic, many of you have had face-to-face medical appointments switched to telehealth (phone or video) appointments.  We’d like to hear about your experiences of this – good and bad. If you are happy to share your … Read More

Many people contact our TSA Nurse to say that they have trouble finding a GP who has experience with the health needs of someone with TSC, and that this can lead them to feel frustrated and isolated. Here are some tips that we hope will help.

On behalf of our staff and management committee, we thank everyone who completed our survey. The aim of this survey was to find out more about you, our TSC community. We had an excellent response and your feedback will help our planning for 2020.

Everyone who completed TSA’s 2019 survey went into the draw for a chance to win one of two $100 gift vouchers for Westfield. Congratulations to our winners Nicole Stone in Western Australia and Rob Rossano in New South Wales. Thank … Read More

Thanks to everyone who has already completed TSA’s 2019 survey.  This is the last week to give us your feedback.   Please follow this link to fill out the survey: https://www.surveymonkey.com/r/TSASurvey2019 Everyone who participates in this survey has the opportunity to go into the prize draw to … Read More

Read all the latest news and updates from TSA including how to have your say in our latest survey, save the date for our 2020 TSC Connect Conference and much more

TSA’s Annual Report for 2019 is now available. The report charts our activities and successes this year which have been made possible thanks to the support of our fantastic TSC community.  In response to feedback from our members about good … Read More

The TSA team is looking for an enthusiastic admin whizz who has 3-4 hours per week available to work from home on a regular basis. More details: SEEK volunteers

The TSA Survey 2019 is now open.  We urge you to complete it asap.  The aim of this survey is to find out more about you, our TSC community.  Your feedback is important in helping TSA focus its efforts and further improve our services, communications and fundraising.  We are also … Read More

Thanks to those who were able to attend TSA’s AGM last Sunday. It was a positive and productive meeting and we are delighted to welcome Miriam Chalk and Rob Haggett as new committee members and Alison McIvor as a re-elected … Read More

TSA’s new nurse service, run by Kim Kerin-Ayres is a free, confidential information and support service to support you with information, links to practical support and to help you live well with TSC.  Kim can help you with any questions … Read More

Do you or a member of your family have a genetic condition? Would you like to understand more about genes, genetic testing and research? Genetic Alliance is running a free information seminar on Wednesday 30 October 2019 from 10am to … Read More

The Elizabeth Pinkerton Memorial Award is presented annually by Tuberous Sclerosis Australia to a health professional to recognise their efforts in improving the lives of TSC-affected people and their families in Australia. Thank you for the nominations we have already … Read More

The Elizabeth Pinkerton Memorial Award is presented annually by Tuberous Sclerosis Australia to a health professional to recognise their efforts in improving the lives of TSC-affected people and their families in Australia. TSA is now pleased to seek nominations for … Read More