Volunteers needed

Category: Advocacy, TSA News | 0

Tuberous Sclerosis Australia is establishing a working group of families and teachers to assist us with the development of some new online resources to help empower parents and teachers/educators about the learning challenges children with TSC often face and how best to support these. Can you help?

Free Zoom Education Events

Category: Events, TSA News | 0

TSA is offering two free zoom education events on topics you have told us you need help with. We will connect you with leading experts who can offer practical tips and answer your questions. These online events are free to … Read More

Please support TSA’s COVID-19 Emergency Appeal

Category: Uncategorized | 0

By making a tax-time donation to our COVID-19 Emergency Appeal you can have a big impact on our ability to help all Australians with TSC who rely on our help, especially during these difficult and uncertain times. Now more than ever we need your support. Every gift, no matter how big or small, will really make a difference to our work. So please, donate now if you can.

Parachute Packs now available

Category: Events, TSA News | 0

Thank you to everyone who joined us on Friday 15 May, TSC Global Awareness Day for the launch of our Parachute Pack. If you missed it, you can click here to view a recording of the event. We are thrilled that families of children who are diagnosed with Tuberous Sclerosis Complex (TSC) will, for the first time, have access to accurate, up-to-date support and information packs, ensuring they are aware of life-changing early intervention treatments for their child.

Today is TSC Global Awareness Day

Category: Events, TSA News | 0

Today is TSC Global Awareness Day and we are launching our Parachute Pack. Please join us at 10am this morning for a virtual event where we will come together to mark this special day and these wonderful new educational resources for families facing a new diagnosis of TSC.

COVID-19 Children’s Book

Category: COVID-19 | 0

Talking to children about this virus isn’t always easy. The NSW Department of Health has released a great booklet to help parents talk to their young children about COVID-19. We thought you might find this a helpful resource for your … Read More

Join us for TSC Global Awareness Day

Category: Events, TSA News | 0

You are invited to join us at 10am (AEST) on Friday 15 May for a zoom video call to mark TSC Global Awareness Day and celebrate the launch of TSA’s new diagnosis parachute packs. Get your family together and have some fun.  Put on your (temporary) TSC wave tattoos and give us a song, a dance, or just a wave to show your support for everyone living with TSC.

Tips for Parents in the time of COVID-19

Category: COVID-19, TSA News | 0

You may find the following tips for parents and carers in the time of COVID-19 a helpful resource. This information was shared with us by Prof Petrus de Vries, a child and adolescent psychiatrist at the University of Cape Town, South Africa who specialises in TAND (TSC Associated Neuropsychiatric Disorders). 

Reach Out, April 2020

The April 2020 edition of Reach Out is now available to read online. This issue’s contents include:  Getting the most out of a visit to your GP, Parker’s Story,  Research News and much more… 

Staying well during COVID-19

Category: COVID-19, TSA News | 0

The outbreak of the coronavirus COVID-19 has impacted people in many and varying ways all around the world. It is understandable that during this global pandemic people may be feeling afraid, worried, anxious and overwhelmed by the constantly changing alerts and media coverage regarding the spread of the virus. It is normal to feel stress about this uncertain situation. We have gathered some wellness resources to help you and your family manage your wellness and wellbeing during these times.

Stay up to date with COVID-19

Unless you or your child is acutely unwell, we encourage you to talk to your doctor about the implications of COVID-19 specific to your individual circumstances.  If you or your child is acutely unwell call 000 for emergency assistance. The most up-to-date and recommended links and sources of more general health information are detailed below

TSC Global Awareness Day is coming soon

Category: Uncategorized | 0

You can join this year’s TSC Global Awareness Day celebrations by joining our #Tatts4TSC campaign. Now in its third year, #Tatts4TSC provides TSC families with a simple and easy way to raise awareness about this rare disease and have some fun while fundraising to support TSA’s work.

Save the date for Lizzie’s Lunch 2020

Category: Uncategorized | 0

Save the date: Sunday, 14 June 2020 at The Hills Lodge, Castle Hill.
Lizzie’s Lunch is one of TSA’s major annual fundraising events. Funds raised provide vital support for people living with tuberous sclerosis throughout Australia. Tickets will be on sale soon for our 7th Lizzie’s Lunch.

Rare Disease Day Event

Category: Events | 0

You are invited to join Genetic Alliance, Sanofi Genzyme and Syndromes without a name for an evening of discussion and interaction with the rare disease community. Those impacted by rare diseases often experience significant health, psychosocial, economic burdens and diagnostic … Read More

How to get the most out of your GP

Category: Uncategorized | 0

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.

Clinical trial of topical rapamycin (sirolimus) for facial angiofibromas – some interstate travel funding available

Dr Kate Riney and the team at Queensland Children’s Hospital are currently recruiting patients for a formal phase II/III trial of topical rapamycin (sirolimus) for facial angiofibromas.  Some funding for interstate travel is available, making this trial available for eligible … Read More

Read our survey results

Category: TSA News | 0

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.

Thank you Kerfoot

Category: Fundraising, TSA News | 0

You may have recently read Oskar’s story in our Christmas Appeal. We are thrilled to share it has inspired a $5,000 donation. Heartfelt thanks to the team at Kerfoot Pty Ltd for your exceptionally generous Christmas gift. Oskar’s dad, Ryan … Read More

Survey Winners

Category: TSA News | 0

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

Last chance to complete the TSA Survey

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

November newsletter

Category: TSA News | 0

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

Reach Out, October 2019

The October 2019 edition of Reach Out is now available to read online. This issue’s contents include: Welcome Kim, TSA’s new Nurse The Value of Connections Research News If you would like to receive Reach Out by post, sign up … Read More

TSA Survey 2019

Category: TSA News | 0

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

Tickets are selling fast for Comedy for a Cure

Category: Events, Fundraising | 0

Tickets are now on sale for Sydney’s first Comedy for a Cure. We hope you will join us for a night where we will harness the power of laughter to raise critically needed funds to help people affected by a rare and devastating disease called Tuberous Sclerosis Complex (TSC). Comedy for a Cure will feature a fantastic line up of comedians with Peter Berner headlining the show

TSA’s AGM 2019

Category: TSA News | 0

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

Siblings Australia Workshops

Category: Events | 0

Siblings Australia offer support for siblings of children and adults with chronic conditions including disability, chronic illness and mental health issues. They are running a series of workshops in Brisbane (26 July), Adelaide (29 July) and Sydney (8 August) for … Read More

New helpline for Australian’s living with epilepsy

Category: TSA News | 0

Epilepsy Action Australia has recently launched a new service for Australians living with epilepsy. This is great news for families affected by Tuberous Sclerosis Complex many of whom live with epilepsy too. Please connect with this service should you have any questions around yours or your child’s epilepsy.

Make your tax time donation to TSA today

Category: Uncategorized | 0

Tuberous Sclerosis Complex can strike anyone at any time. Luckily for little Sammy TSA were there to help. Please make a tax-time donation today to help Tuberous Sclerosis Australia be there to inform, empower and support families like Sammy’s.

Reach Out, April 2019

Category: Reach Out, TSA News | 0

The April 2019 edition of Reach Out is now available to read online. This issue’s contents include: Stories from TSC families about their experiences with a new diagnosis of TSC Welcoming TSA’s new General Manager Invitation to join TSA at … Read More

Welcome Jackie

Category: TSA News | 0

The management committee of Tuberous Sclerosis Australia (TSA) would like to send our heartfelt thanks to our departing general manager, Clare Stuart.  Clare has made a momentous contribution to the Australian TSC community and whilst we are sad to see … Read More

Save the date for TSC Conference 2020

Category: Events | 0

TSA will be hosting its next TSC Community Conference in Sydney on Saturday 2 and Sunday 3 May 2020                                     at the University of New South Wales, Randwick. Please lock these dates in your new 2020 diary now!

nib foundation partners with TSA

Category: Fundraising, TSA News | 0

Tuberous Sclerosis Australia is thrilled to announce our new partnership with nib foundation. Each year nib foundation donates around $2 million to make a positive difference to the health and wellbeing of Australian communities. The Australian TSC community thanks nib … Read More

This Christmas, give a gift that changes lives

Category: Fundraising, TSA News | 0

This Christmas, you can help families like Felix’s have someone to turn to for life changing help and support.

Take a moment to imagine a world without TSA. In this world, when you or someone you love is diagnosed with this incurable rare disease, there is no one at the end of the phone that can answer your questions. There is no one who can listen to your fears and understand the shock, isolation and grief that comes after you hear the words ‘tuberous sclerosis complex’ for the first time.

Join us in Sydney to launch our new children’s book

Category: Events, TSA News | 0

All of our Sydney TSC community, particularly families with young children, are invited to join us on 1 December to help launch our new resource to explain TSC to children.
If you cannot make this event, sign up to TSA’s email newsletter for more information about this book and how you can get your copy.

Adults with TSC weekend in 2019

Category: Events | 0

If you are an adult living independently or semi-independently with TSC who would like to meet other adults with TSC, we want to hear from you. We’d like to know if you are interested in attending a weekend event to … Read More

Reach Out, October 2018

Category: Reach Out, TSA News | 0

The October 2018 edition of Reach Out is now available to read online. This issue’s contents include: Information about transition from paediatric to adult health services Our celebrations gallery highlighting the many things young people with TSC do for fun … Read More

Proposed TSA Constitutional Changes

Category: TSA News | 0

At the next annual general meeting (AGM) of Tuberous Sclerosis Australia Inc., there will be several changes to TSA’s constitution proposed. These are a result of a review of our governance practices by the TSA. This was previously advised in … Read More

Understanding TAND: TSA’s 2018 Education Events

TSC Associated Neuropsychiatric Disorders: including learning, behaviour, autism and anxiety
These educational events are for people with TSC, their family members and interested health professionals. TSA is also working with our TSC Professionals Network members to hold events specifically for health professionals to increase their understanding of TAND.

Planned educational events in 2018:


We’re joining The Growth Project

Category: TSA News | 0

Tuberous Sclerosis Australia is proud to  be participating in The Growth Project – a one-year leadership development program that brings together leaders of emerging charities with business leaders so that they can share and learn from their previous experience, grow individually and have … Read More

Reach Out, April 2018

Category: Reach Out, TSA News | 0

The April 2018 edition of Reach Out is now available to read online. This issue’s contents include: Powerful stories from siblings Our 2018 back to school gallery Celebrating our fundraisers If you would like to receive Reach Out by post, … Read More

Access to mTOR Inhibitors for Epilepsy

Category: Advocacy | 0

Thank you to all the members of the TSC community who made a contribution to our draft submission to the pharmaceutical benefits advisory committee (PBAC). The submission to include Afinitor (Everolimus, an mTOR inhibitor medicine) on the pharmaceutical benefits scheme (PBS) … Read More

Give now to TSA’s Christmas Appeal

Category: Fundraising, TSA News | 0

TSA aims to raise $10,000 to give hope to newly diagnosed families through our Christmas Appeal.

Can you help children like Greta and her family?

Our goal is to improve the new diagnosis journey for every one of the babies born tomorrow with TSC. We can’t take their devastating disease away, but we can make sure they get access to life changing early intervention, the right tests, the best possible treatments, and to the experts in the field. Please donate now and give hope this Christmas to families devastated by a TSC diagnosis.

Donate now www.tsa.org.au/help/giftofhope

Reach Out, October 2017

Category: Reach Out | 0

The October 2017 edition of Reach Out is now available to read online. This issue’s contents include: TSC Paralympian Taylor Doyle’s next battle with epilepsy Information and stories about how TSC affects the kidneys Celebrating our fundraisers If you would … Read More

Webinar recording now available:

Category: TSA News | 0

Thank you to Dr Chirag Patel for giving his time and expertise for this webinar. For more information on the genetics of tuberous sclerosis: Read our genetics information page Read the stories of families with TSC about how they have approached … Read More

TSC Heroes run City to Surf

Category: Fundraising | 0

Our TSC Heroes Team are raising vital funds through the 2017 City to Surf in Sydney on Sunday August 13. One week out from the event and they’ve already raised almost $4,000. Great effort! We are especially proud of Sophie for participating … Read More

Join our genetics of TSC webinar

Category: Events | 0

Hear about the genetics of TSC, including what we know and what questions researchers are still exploring. Learn about genetic testing and how to access genetic services in your area. Find out about current and emerging technologies that ca help people with TSC make decisions about planning their families.
A great opportunity for extended family members to ask questions about the genetics of TSC, so consider inviting your family and friends to join.

Share your TSC kidney story

Category: TSA News | 0

TSA is fortunate to have Sydney University Genetic Counselling student, Todor Arsov working with us. Todor has already completed a revision of our Genetics Information Page and he needs help with his next project for TSA. We’re collating the experiences … Read More

TSC online education events

Category: Events, TSA News | 0

As announced in the October 2016 issue of Reach Out, TSA is running a series of webinars this year which will bring our educational events directly to you at work or at home. In response to the topic suggestions from our … Read More

Reach Out, April 2017

Category: Reach Out | 0

The April 2017 edition of Reach Out is now available to read online. This issue’s contents include: Huge achievements of the TSC Heroes at Ironman Western Sydney Stories from people living with TSC, including Greta’s story A focus on digital … Read More

Thank you Sue and Hayley

Category: TSA News | 0

By TSA President, Debbie Crosby We have had so many wonderful and dedicated volunteers who help run and support Tuberous Sclerosis Australia.  I would like to thank Sue Williamson who has stepped down as one of our Regional contacts in … Read More

TSC Global Awareness Day Picnics

Category: Events | 0

This year our annual picnics will be held on Sunday 21 May 2017. These events are an opportunity to meet others living with the challenges of TSC. Everyone with TSC is an individual; however many find meeting face to face … Read More

Notice of Annual General Meeting

Category: Events, TSA News | 0

The Annual General Meeting of Tuberous Sclerosis Australia Incorporated will be held in Melbourne on Sunday 8 October 2017 at 9.00am. We encourage all members of TSA and interested parties to attend. Visit  www.tsa.org.au/melbourne for more information about the event.

2016 Annual Report available online now

Category: TSA News | 0

Our annual reports provide a summary of the year’s activities and our financial position. They are a great way to get to know Tuberous Sclerosis Australia and how your donation will be used for our work. You can now read the report online.

Reach Out,October 2016

Category: Reach Out | 0

The October 2016 edition of Reach Out is now available to read online. This issue’s contents include: New information on epilepsy in TSC, including new approaches for treatment Stories from TSC families and advice for surviving an EEG Celebrating our … Read More

Reach Out, April 2016

Category: Reach Out | 0

The April 2016 edition of Reach Out is now available to read online. This edition’s contents include: A focus on the national disability insurance scheme (NDIS) including the experiences of several people with TSC and their families, as well as … Read More

PKD Public Seminar

Category: Events | 0

PKD Foundation Australia are a new organisation working to find a cure for Polycycstic Kidney Disease (PKD). Between 5000 and 6000 Australians live with PKD, and a small number of them also have tuberous sclerosis. Research has estimated that between … Read More

Order TSC Awareness Cards

Category: Advocacy | 0

Do you want an easier way to explain tuberous sclerosis to people you meet? These small business cards provide a brief explanation of TSC and direct people to Tuberous Sclerosis Australia’s website to learn more. There is space to write … Read More

Epilepsy and TSC Information Day in Brisbane

Category: Events | 0

Please join us in Brisbane to learn more about both epilepsy and tuberous sclerosis (TSC). Tuberous Sclerosis Australia is proud to partner with Epilepsy Queensland and the Complex TSC Clinic and Neurosciences Unit, Lady Cilento Children’s Hospital to host this event. If … Read More

Join the TSA team

Category: TSA News | 0

Build your career by joining the TSA team. This page lists the vacancies we are actively recruiting for. More information on volunteering is available. National fundraising, communications and events manager (Orange NSW, part-time) Tuberous Sclerosis Australia exists to improve the … Read More

Reach Out, October 2015

Category: Reach Out | 0

The October 2015 edition of Reach Out is now available online. This edition’s contents include: A focus on mTOR inhibitors, new medicines forTSC, including an updated information page and stories from others living with TSC who have used these medicines … Read More

TSC Research News

Australian researchers continue to drive our local TSC research agenda Our dedicated clinical researchers in Australia are currently running and planning the following studies: Ten Australian patients have been enrolled in the international Exist-3 study. This international randomised clinical trial … Read More

Reach Out, April 2015

Category: Reach Out | 0

The April 2015 edition of Reach Out is now available online. This edition’s contents include: A focus on the financial challenges of living with TSC, including a list of help that is available and advice from others living with TSC … Read More

TSC Professionals meet in Melbourne

Category: Uncategorized | 0

In October 2014 TSC expert clinicians from around Australia met in Melbourne to discuss management of TSC and collaborate on projects that will improve care for people with TSC. Tuberous Sclerosis Australia was represented by Debbie Crosby (President) and Clare … Read More

#IAMTSC awareness campaign

Category: Uncategorized | 0

The Tuberous Sclerosis Alliance, our sister organisation in the United States, have developed the #IAMTSC public awareness campaign – aiming to reach members of the general public to explain Tuberous Sclerosis, the importance of TSC research and the stories of … Read More

TSC Heroes fundraising success

Category: Fundraising | 0

We have been amazed and humbled by the fundraising efforts of the TSC Heroes team lead by the Place family. Jeff and Manoela Place, along with their family and friends raised a total of $44,667 for Tuberous Sclerosis Australia. Their … Read More

Reach Out, October 2014

Category: Reach Out | 0

The October 2014 edition of Reach Out is now available online. This edition’s contents include: •    A special focus on using the internet to find information and support – including advice from other families living with TSC •    A celebration … Read More

Updates on the skin and TSC

Category: Uncategorized | 0

Recently several new information resources have emerged on TSC and the skin. Although many medical professionals view the skin signs of TSC as a minor concern, it is often reported as significant by many patients and their families. You can … Read More

Bringing home some oversized luggage: Inspiration and a long to-do list

Category: Uncategorized | 0

I was fortunate to be funded through TSC International to attend the recent TSC World Conference held in the USA. I have returned from this trip with lots of great information, some strengthened relationships and renewed inspiration for ways that we can continue our work to ensure that people with TSC in Australia have access to the best information, treatment and support.

The TS Alliance World Conference 2014

Category: Events | 0

A post from Clare Stuart, ATSS Project Manager I am grateful to be attending this event and excited to bring back knowledge, ideas and inspiration to enhance the work of ATSS for the benefit of TSC families across Australia and … Read More

Improving the TSC knowledge of GPs

Category: Advocacy | 0

For many people with TSC, particularly adults, their general practitioner (GP) is the doctor who manages their care. Our new flyer encourages doctors to spend an hour getting up to date on the diagnosis, surveillance and treatment of TSC. The one … Read More

Reach Out, May 2014

Category: Reach Out | 0

The May 2014 edition of Reach Out is now available online. This edition’s contents include: A special focus on genetic testing, with articles from families and a new information page Personal stories from the parents of Justin and Taylor; plus … Read More

Reach Out, November 2013

Category: Reach Out | 0

The November 2013 edition of Reach Out is now available online. This edition’s contents include: A special focus on Autism with articles from TSC families and professionals Personal stories from the parents of Elysse, Alana, Hamish, Bradley and Amelia. The … Read More

Reach Out, May 2013

Category: Reach Out | 0

The May 2013 edition of Reach Out is now available online. This edition’s contents include: A review of the 2013 Family Conference in Perth Stories from Rosemary, 46 and Olivia, 8, who both have TSC New sections celebrating some of … Read More

May 15 is TSC Global Awareness Day

Category: Events | 0

On this day, thousands of individuals and families affected by Tuberous Sclerosis Complex (TSC) will join together to increase public awareness of the rare disease and share their stories of hope for the future. Global Awareness Day is an initiative … Read More

Branching Out in Perth

Category: Events | 0

The 2013 ATSS Family Conference was held in Perth on 2nd and 3rd of March. This was the first time ATSS has held a major event in Western Australia and it was a great opportunity for people from Perth and … Read More

Farewell Sue Pinkerton

Category: Uncategorized | 0

Sue Pinkerton has completed her final term as President of the Australasian Tuberous Sclerosis Society. ATSS will continue as a vibrant organisation under new President, Debbie Crosby, while Sue moves on to new challenges in other areas. As President of … Read More

Knowledge Gained and Connections Made in Melbourne

Category: Events | 0

June saw the biggest Tuberous Sclerosis event ever held in Melbourne. An enthusiastic group of families and health professionals gathered at Royal Children’s Hospital for the ATSS conference. The conference provided different perspectives from different speakers:three neurologists, an epilepsy nurse, … Read More

Reach Out, November 2012

Category: Reach Out | 0

The November 2012 edition of Reach Out is now available online. This edition’s contents include: A review of the 2012 Melbourne and Brisbane conference events; A tribute to Sue Pinkerton, who recently retired as ATSS President after 20 years of … Read More

Help make medical treatment accessible for people with SEGAs

Category: Uncategorized | 0

Early in 2012, Afinitor was approved by the Therapeutic Goods Administration (TGA) for: “the treatment of patients with subpendymal giant cell astrocytoma (SEGA) associated with tuberous sclerosis (TS) who require therapeutic intervention but are not candidates for curative surgical resection.”
Unfortunately, the medicine can cost more than a thousand dollars per month for just one patient. Because the treatment is ongoing, Afinitor is very expensive for the patient or their hospital.
Comments form TS affected families would be welcomed by the Pharmaceuitcal Benefits Advisory Committee who make decisions about whether to list the medicine on the Pharmaceutical Benefits Scheme. Your comments need to be submitted by 10th October 2012.

Topical mTOR clinical trial to commence in Sydney

Three years of fundraising has led to Sydney Children’s Hospital being funded by ATSS to take part in the first randomized controlled trial for the topical use of Rapamycin for angiofibromas, the skin condition that affects up to 90% of people with Tuberous Sclerosis Complex. Thank you to the hundreds of people that organized fundraising activities and donated. Over $200,000 was raised; however, the average donation was under $100.

Reach Out, May 2012

Category: Reach Out | 0

The May 2012 edition of Reach Out is now available online.
This edition’s contents include: Summary of the 2011 ATSS Conference; Article about topical use of mTOR inhibitors for facial angiofibromas; A personal story from Kate Green about her son Hamish.

Riding the TSC Wave: The 2011 ATSS Family Conference

Category: Uncategorized | 0

More than 120 people, from every state and territory of Australia as well as New Zealand, gathered in Sydney in October for the 2011 Family and Medical Conference. Highlights included the high calibre of international and local speakers, the varied and comprehensive programme and the opportunities for all attendees to share experiences.

ATSS welcomes its first employee

Category: Uncategorized | 0

Clare Stuart (nee Pinkerton) started as ATSS’ first Project Officer in November 2011. Clare has commenced work on two projects: Rebuild of the ATSS website, transforming it into an online directory to help TSC families share resources; The 2012 Family Conference, being held in Melbourne on 2nd or 3rd June.

Seminar Day in Sydney

Category: Events | 0

On Sunday 12th August, ATSS will have a Seminar Day at Sydney Children’s Hospital. The day will include: The ATSS Annual General Meeting Professor Ernie Sommerville, speaking about what a neurologist does when seizures cannot be controlled Dr David Mowat, … Read More