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

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 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