Do you know about our children’s book?
A Little Book About TSC is the first children’s book of its kind in Australia. It helps to explain this complex condition to the children who live with TSC, their friends, family members and classmates.
Read all the latest news from TSA
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.
Have your say in the GeneEQUAL study
GeneEQUAL is a new study in NSW looking at how we can provide inclusive genomic healthcare. The first step involves interviews with adults with intellectual disability about their experiences with genetic services, even if that happened when they were a … Read More
Tickets are now on sale for Comedy for a Cure
Buy your tickets today for TSA’s VIRTUAL Comedy for a Cure.
Date: Saturday 30 October.
Time: 7.30pm
COVID-19 Vaccination Information
The TSC Alliance in the USA and its medical advisory committee has recently provided an updated COVID-19 Vaccine position Statement. You can click here to read it in full. Whilst the situation in Australia regarding vaccine approvals and availability is … Read More
Congratulations to Dr Freyja Page
TSA is delighted to announce that Dr Freyja Page, a General Practitioner in Townsville, is the winner of the 2021 Elizabeth Pinkerton Memorial Award. This award is given annually by TSA to a health professional in recognition of their efforts … Read More
Register for City2Surf
Registrations for the virtual City2Surf 2021 are now open! Sign up to run (or walk)in this icon event, then inspire your family and friends to support your efforts by donating to TSA in your honour.
Comedy for a Cure 2021 – save the date!
Comedy for a Cure will be back in 2021 on Saturday 30 October 2021 via zoom.
SAVE THE DATE for our TAND+ Conference
Please save Saturday 20 November for our next TSC Conference which will be both a face-to-face event for everyone in Perth, WA and a virtual event for anyone anywhere to join in. The focus will be on the updated international … Read More
We need your feedback and ideas
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
COVID19 vaccination for people with a disability
Health Care Australia (HCA) can provide COVID vaccination options people with a disability living in residential care. HCA also offer a home visit vaccination program. To find our more visit: https://c19vax.healthcareaustralia.com.au/
Beyond the Guidelines
Congratulations and thanks to Clare Stuart, TSA’s former General Manager, for all her work on “Beyond the Guidelines: How We Can Improve Healthcare for People with Tuberous Sclerosis Complex from Around the World.” This paper, which has just been published, … Read More
Updates to the International TSC Guidelines
Congratulations to the team involved in the first significant updates to the clinical consensus guidelines for the diagnosis, surveillance and management of tuberous sclerosis complex (TSC) since 2013. The new guidelines, which have just been published, take into account new … Read More
Read all the latest news from TSA
TSA’s August newsletter is now available to read online. In this month’s issue, you can find out about two new Zoom Education Events in September. We also recommend saving 20 and 21 November for our TAND+ Conference, which will be … Read More
ASD and ADHD
If you missed or want to rewatch Dr Vinita Prasad’s recent zoom education event on ASD and ADHD, it is now available on our website
Today is Dying to Know Day
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
Research into TSC and autism
Congratulations to Dr Rebecca Mitchell at Royal Children’s Hospital in Melbourne for being a finalist in The University of Melbourne ‘3 Minute Thesis Competition’. Here’s a link to her video about her research into TSC and autism. https://vimeo.com/575196995
Research Round Up July 2021
Here is the latest issue of Research Round Up for July 2021.
Study of a cohort of adult patients with TSC
About this study This study describes the clinical and genetic characteristics, management and quality of life of adults with Tuberous Sclerosis Complex (TSC), who had been diagnosed in adulthood compared to those diagnosed in childhood. This Spanish study of 57 … Read More
Treatment of cardiac rhabdomyomas with mTOR inhibitors in children with TSC: A systematic review
Cardiac rhabdomoyomas and TSC Cardiac rhabdomyomas (CRs) are non-cancerous tumours in the heart. Both single and multiple CRs are a major diagnostic criteria for TSC, with the likelihood of TSC diagnosis varying depending on the number of CRs. Multiple CRs … Read More
Zoom Education Event on ASD and ADHD – Register Now
TSA’s next Zoom Education Event is on Tuesday 27 July 2021 at 7pm AEST. Topic: Autism (ASD) and Attention Deficit Hyperactivity Disorder (ADHD). Presenters: Vinita Prasad, Developmental Paediatrician and John Tracey, Child Development Nurse Navigator for ASD, Queensland Children’s Hospital, … Read More
TSC research project
Flinders University Medical School is conducting a research project into how TSC patients and their carers are impacted by the disease, and how the medical system can best help. See below for more information. If you think you’d like to … Read More
Read all the latest news from TSA
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.
TSC in the news – Go Matilda!
Did you see Matlida in the news? This is a wonderful story about how a special frame enables Matilda to run free. Nine-year-old Matilda was born with TSC, which has affected her mobility, but she now easily keeps up … Read More
We’re looking for a volunteer digital communications assistant
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
TSA’s founder features in New Idea
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.
You have just a few days to nominate a health professional for the Elizabeth Pinkerton Memorial Award 2021
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
Raising awareness for TSC
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
Lizzie’s Lunch raises over $24,000
Thank you to everyone who supported the 8th Lizzie’s Lunch at The Hills Lodge on Sunday 20 June. It was a wonderful day and raised $24,191 to help individuals and families facing the challenges of life with Tuberous Sclerosis Complex … Read More
Read all the latest news from TSA
TSA’s June newsletter is now available to read online. In this months edition, you can learn more about TSA’s end of financial year appeal. It’s also time to join or renew as a TSA member. This will entitle you to attend our Zoom Education Events for free, the next one is coming up on 27 July. You also still have a few days to say thanks to the health professional you’d like to see win the Elizabeth Pinkerton Memorial Award this year.
SWAN Disability Transition Conference
Our TSC Community is invited to join the SWAN Disability Transition Conference through Zoom. The conference features several speakers talking on a variety of topics, including ECIS, kinder, school, disability supports, puberty and post-school options.
Save the date for TSA’s Zoom Education Event on ASD and ADHD
TSA’s next Zoom Education Event will be held on Tuesday 27 July 2021 at 7pm AEST. Topic: Autism (ASD) and Attention Deficit Hyperactivity Disorder (ADHD). Presenters: Vinita Prasad, Developmental Paediatrician and John Tracey, Child Development Nurse Navigator for ASD, Queensland … Read More
In Safe Hands educational resources
TSA’s In Safe Hands educational resources are freely available for you to read online or download and print your own copy. Earlier this year we developed a suite of new resources to assist families during the schooling years. The goal … Read More
Donate now to TSA’s tax-time appeal
Please join team TSA by donating in support of our tax-time appeal today and help us make a difference to individuals and families impacted by TSC.
Are you member of TSA?
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.
Nominate a health professional for the EPMA 2021
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
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
TSA’s latest enewsletter is now available
Read all the latest news from TSA in our May e-newsletter.
TSC in the news: Lynn Wilson’s story
Our founder, Lynn Wilson is featured in a local Illawarra community magazine which is where it all began for TSA. We hope that by sharing Lynn’s story we can raise awareness about Tuberous Sclerosis Complex (TSC) and encourage people to … Read More
You are invited to take part in a new research project
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
Research Round Up, April 2021
In this first Research Round Up for 2021 we are delighted to feature three significant studies which Australian-based researchers have undertaken. Read more now
Have you registered yet?
The TSC Conference is now just 2 weeks away. We have a fantastic line up of expert speakers who will get you up to date with all the latest research and treatment options. Scan the QR code for details. This … Read More
You have just a few days to nominate a health professional for the Elizabeth Pinkerton Memorial Award 2021
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
New Information Page on NDIS
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.
TSC features in The Big Issue
Thank you to the team at The Big Issue for featuring TSC Global Awareness Day in their upcoming edition. We are grateful for this opportunity to help us raise awareness about TSC. You can purchase a copy from a vendor on … Read More
Epilepsy in adult patients with TSC
Epilepsy develops in 70-90% of children with TSC and it is often resistant to medication. This study investigated the potential benefits of early (preventive) treatment with vigabatrin to prevent TSC-related seizures.
The metformin in tuberous sclerosis (MiTS) study
Epilepsy develops in 70-90% of children with TSC and it is often resistant to medication. This study investigated the potential benefits of early (preventive) treatment with vigabatrin to prevent TSC-related seizures.
Read our April e-newsletter now available
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.
April 2021 update on the COVID-19 vaccination program
As you will have heard the Government has recently recommended that people under 50 years of age are given the Pfizer vaccine rather than AstraZeneca. We know that this may have resulted in the postponement of vaccinations for some of our community. It is a confusing time with information and expectations changing rapidly. Unfortunately, at this stage, there is no specific advice for people with TSC, and it seems unlikely that there will be in the short term. We can certainly understand and sympathise with why members of our community may be feeling frustrated by the lack of certainty.
Reach Out, April 2021
The April 2021 edition of Reach Out is now available to read online. This is TSA’s 40th anniversary issue!
Official launch of ‘In Safe Hands’ TSC education resources
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.
Nominate a health professional for the Elizabeth Pinkerton Memorial Award 2021
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
TSC in the news
Listen to the Chalk Family talk about life with TSC on ABC Radio – Hobart. Jemima, big sister to Caleb who lives with TSC shares a little about her story as a sibling of someone with a rare disease, and mum Miriam talks about lending a hand in the creation of our In Safe Hands educational resources for families and educators.
Update on the COVID-19 vaccination program
Phase 1B vaccinations is now underway and you and your family may be eligible. This group includes people with specified and underlying medical conditions including ‘those living with significant disability requiring frequent assistance with activities of daily living’ and their carers.
Mindfulness Resources
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.
E-Newsletter March 2021 edition
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
One week to go! Register now for TSA’s upcoming zoom education event
Join us on Tuesday 16th March for our next zoom education event, topic – Managing your stress and anxiety. Stress and anxiety are common in families and individuals affected by TSC. Living with the added stress of COVID is not … Read More
COVID-19 Vaccinations and TSC
There is a lot of interest around what the plan is in regards to the rollout of the new COVID-19 vaccine. The Australian Government has now confirmed the broad picture of the National Rollout Strategy. Here is a brief summary of what we know so far.
Save the date for Lizzie’s Lunch 2021
Save the date for Lizzie’s Lunch 2021! The 8th Lizzie’s Lunch will be held on Sunday 20 June, from midday at Hills Lodge, Castle Hill. Tickets will go on sale soon but put this date in your diary now. Limited tickets available this year to ensure our event can be COVID safe.
Today is Rare Disease Day
Today, 28 February, is Rare Disease Day and we invite you to take action. This year Tuberous Sclerosis Australia (TSA) is celebrating 40 years of service to our TSC Community in Australia. Join the #40kfor40yearsTSCchallenge today on rare disease day and help people living in Australia with TSC.
Australia’s COVID-19 Vaccine Roadmap
There is a lot of interest around what the plan is in regards to the rollout of the new COVID-19 vaccine. The Australian Government has now confirmed the broad picture of the National Rollout Strategy. Here is a brief summary of what we know so far.
Save the date!
SAVE THE DATE! This year on 15 & 16 May, TSA will host a virtual conference for our TSC Community and Health Professionals. Please block this date in your diary now and we will share more details very soon.
Research Round Up, February 2021
In this first Research Round Up for 2021 we are delighted to feature three significant studies which Australian-based researchers have undertaken. Read more now
More money for TSC research
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).
TSC enewsletter – February 2021
Click here to read all the latest TSC news in our new-look enewsletter February 2021 edition now available online.
TSC talk with Kim
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.
Factors associated with autism spectrum disorder (ASD) in children with TSC: a systematic review and meta-analysis
The aim of this study was to summarise the results of all available research addressing the factors associated with the development of autism spectrum disorder (ASD) in children with TSC. There were 42 suitable studies which included data for 3,542 children with TSC.
Prevention of epilepsy in infants with TSC in the EPISTOP trial
Epilepsy develops in 70-90% of children with TSC and it is often resistant to medication. This study investigated the potential benefits of early (preventive) treatment with vigabatrin to prevent TSC-related seizures.
Add-on Cannabidiol treatment for drug-resistant seizures in TSC
Cannabidiol (CBD) is approved as Epidyolex in Australia. The aim of this study was to look at whether the addition of CBD to other epilepsy medications was successful in reducing the number of seizures associated with TSC.
Rare Disease Day 2021
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!
Rare disease focus in Western Australia
The Western Australia Department of Health, Office of Population Health Genomics (OPHG) is currently reviewing the supports, services and systems available to people in West Australian living with rare, genetic and undiagnosed conditions and their families, and how the community … Read More
Videos on Genetics and Genetic Counselling
The following videos, kindly made available to us by Syndromes with out a Name (SWAN) may be useful for members of our TSC Community. Professor Amor gives a good description of genetics and genetic testing (run time 40 minutes) and … Read More
School to Work Webinars in January 2021
Are you a secondary student with disability considering your future after school? School to Work aims to inspire, increase the confidence of and motivate students with disability and their families to make a start on the road to meaningful, paid … Read More
Neurodevelopmental disorders in children with TSC (Video)
Neurodevelopmental disorders in children with TSC
Save the date for our upcoming zoom events
TSA will kick off the new year with two zoom events planned for February and March. Our zoom events will bring you updates and information on topics to help you manage life with TSC. Save the dates in your diary or you can register now.
Buy the video link for Comedy for a Cure 2020
If you missed TSA’s Comedy for a Cure 2020 event held in early December we are giving you another chance to enjoy this very funny show and make a contribution to help everyone in Australia living with TSC. For just $20 you will receive a private link so that you and your family and friends can enjoy the complete show with headline act Tommy Dean.
Legal planning update
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
Research Round Up October 2020
The theme of this issue of Research Round Up is renal manifestations of TSC. We have summarised two recent, important research studies. We are also delighted to include a video interview with Dr Sean Kennedy, one of TSA’s medical advisors.
Christmas Gift Cards on sale
Buy your Christmas Gift Cards from Tuberous Sclerosis Australia, with 50% of the cost of each pack go directly towards funding support and information services provided by Tuberous Sclerosis Australia. Each $9.95 pack contains 21 small gift cards, 7 of … Read More
School photos needed
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
TSC in the news
Listen to Debbie Crosby on ABC Radio talking about life with TSC. She also discusses TSA’s upcoming virtual fundraiser Comedy for a Cure. In this interview, Debbie shares how life with this rare disease is no laughing matter but that … Read More
Do you have a personalised care plan to manage TSC?
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.
Participate in a Worldwide Survey on Access to TSC Medications
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
Are you a young adult aged 18-30 living with TSC?
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
Help for regional families needing city health services
The www.friendlyfaces.info website provides country people and their families / carers, with practical information about hospitals, accommodation and support services when healthcare is required in an unfamiliar city a long way from home. Statistics show that each year, almost 600 rural residents in NSW alone suffer a serious trauma which requires lengthy hospitalisation in a location far from home.
Parent Webinar: Could My Child Have Dyslexia?
For Dyslexia Awareness Month Learning Links is running a special one-hour parents webinar on dyslexia and other reading difficulties. Learn practical information and strategies that you can use to support your child’s reading and spelling at home, so they can better cope at school and reach their full potential.
Nova Young joins TSA
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!
Congratulations Dr Nick Smith
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.
Reach Out, October 2020
The October 2020 edition of Reach Out is now available to read online. This issue’s theme is Telehealth.
Our Annual Report 19/20
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.
Have you been impacted by COVID-19?
Researchers at Melbourne University and the Australian Genomics Health Alliance would like your feedback. They are working on a project for which they are searching for participants to give feedback on the effect of the COVID-19 crisis on the quality … Read More
Notice of TSA’s Annual General Meeting 2020 and proposed changes to the TSA Constitution
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
Are you our next TSC Champion?
TSA recognises our regular givers as TSC Champions. Join our team of TSC Champions today by signing up to make recurring monthly donations to help people in Australia living with TSC.
Final Zoom Education Events for 2020
TSA is offering two further zoom education events this year. These online events are free to TSA members (click here to sign up now if you are not currently a member) but you MUST REGISTER. Neurodevelopmental disorders in TSC children … Read More
Comedy for a Cure – 5th December 2020
Tickets to our virtual Comedy for a Cure event are now on sale. We hope you and your family and friends will join us online for a Christmas get together and a good laugh. And, of course, to raise funds for people in Australia living with TSC. For the very first time, no matter where you live you’ll be able to join this fun online event from the comfort of your lounge room. Buy your tickets now at www.comedyforacure.org.au
Notice of TSA’s Annual General Meeting 2020 and proposed changes to the TSA Constitution
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
Mobility and Accessibility for Children in Australia
The rights of children with disability and medical conditions to safe and accessible transport are not equal to children without disability. Mobility and Accessibility for Children in Australia Inc. (MACA) is a not-for-profit organisation dedicated to supporting and advocating for … Read More
Are you OK?
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
Identifying emerging challenging behaviours in young children
Check out TSA’s new information page on identifying emerging challenging behaviours in young children. This shares the information presented in the recent zoom education event, in which Dr Kate Thomson Bowe talked about recognising and understanding emerging or subtle challenging behaviours. Both the video and presentation slides are now available.
Save the date for our virtual Comedy for a Cure
Our Comedy for a Cure 2020 will be a digital event held on Saturday, 5th December. After the year we’ve all had, in the run-up to Christmas we thought it’d be good to get together virtually across the country for a good laugh. And, of course, to raise funds for Australians living with TSC. You’ll be able to join this fun online event from the comfort of your lounge room. Mark the date in your diary and more details will be announced soon.
September Zoom Education Events
TSA is offering two zoom education events in September. These online events are free to TSA members (click here to sign up now if you are not currently a member). But, you MUST REGISTER as places are strictly limited. Events are … Read More
NSW Health Specialised Intellectual Disability Health Teams
People with TSC and intellectual disability often have more health problems. Many of these health needs can be met by GPs, but sometimes a specialised approach is needed. The good news is that NSW Health has recently announced that Specialised … Read More
TSC Research Round Up July 2020
In this issue of Research Round Up we have included two very different research reports which we hope will be of interest to our TSC Community; Improving developmental abilities in infants with TSC and Multidisciplinary model of care for TSC adults in France.
Reach Out survey outcomes
Thank you to everyone who took part in our Reach Out survey earlier this year. Encouragingly, most people said they read the magazine from cover to cover and that they find the content always interesting and relevant. Readers rated Personal Stories, Research News and TSC Information as the most relevant and interesting content. So, please keep sharing your personal stories with us!
Multidisciplinary model of care for TSC adults in France
About this study This study reports on 90 adults with TSC who attended Centre Hospitalier Universitaire de Bordeaux, between January 2000 and September 2018. Since 2015 this institution has been providing a multidisciplinary team approach to the care of adults with TSC. It does this through … Read More
Improving developmental abilities in infants with TSC
This is a report on a small pilot study of an evidence-based, parent-mediated behavioral intervention focused on improving early social communication and play skills in five children with TSC, aged 1–3 years. Background This team’s previous study published in 2014, found that infants with TSC demonstrated early delays in nonverbal cognition and … Read More
Information on sex and sexuality for young TSC adults
TSA’s recent zoom education event featured Dr Elizabeth Thompson talking frankly about sex, sexuality and managing the transition into adulthood as a TSC-affected individual. Both the video and presentation slides are now available in case you missed it.
Last chance to nominate a health professional for the Elizabeth Pinkerton Memorial Award 2020
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.
Volunteers needed
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?
What do you think of telehealth?
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
Free Zoom Education Events
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
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.
Are you a member of TSA?
TSA memberships are due for renewal. Please renew today, or if you are not already a member please sign up today.
Parachute Packs now available
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
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
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
COVID-19 Crisis Response Survey for families of Individuals with Special Needs
We would like to invite our TSC Community to join in a very time-sensitive, international research project aimed at finding out how individuals with special needs are coping with the coronavirus (COVID-19) pandemic and all its repercussions. Dr Ru Ying … Read More
Join us for TSC Global Awareness Day
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.
Using mTOR inhibitors to treat renal angiomyolipomas (AMLs) in children with TSC
Kidney health is a serious concern for many people living with TSC. Renal cysts and angiomyolipomas (AMLs) often develop. These can obliterate healthy renal tissue and cause bleeding as they grow, leading to chronic kidney disease or devastating bleeding complications. Approximately … Read More
COVID-19 pandemic: critical care guidelines for Australians living with a rare disease
On 8 April 2020, Rare Voices Australia (RVA), in conjunction with its Scientific and Medical Advisory Committee, issued this statement calling for the development of critical care guidelines for Australians living with a rare disease to inform Australian hospitals and … Read More
Research Round Up April 2020
Read TSA’s April 2020 Research Round-Up
Tips for Parents in the time of COVID-19
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).
Early use of sirolimus gel to diminish and prevent angiofibroma recurrence in TSC children
Angiofibromas (AF) are found in a majority of individuals with TSC over 5 years of age. These small bumps are usually scattered on the face, especially on the nose and cheeks, and sometimes on the forehead, eyelids, and chin. Topical sirolimus … Read More
Developmental outcomes in six children with early diagnosis of tuberous sclerosis complex (TSC)
Seizures in tuberous sclerosis complex (TSC) commonly develop in the first year of life and they are often preceded by changes being evident on electroencephalogram (EEG). The onset of such seizures is particularly significant as it is thought that they … Read More
Expert recommendations for the provision of coordinated care for TSC
This excellent paper, which is well worth reading in its entirety, is written by an eminent team of TSC expert health professionals in the UK. It discusses the need to improve TSC management to ensure people with TSC have early … Read More
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
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.
Give us Your Feedback on Reach Out
Currently we send a paper copy of Reach Out twice a year and we also publish the magazine on our website. Some of our community have told us that they are happy to read information online as posts and feel … Read More
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
Lizzie’s Calorie Free Lunch 2020
Due to the coronavirus crisis we will NOT be going ahead with the usual Lizzie’s Lunch event at the Hills Lodge on Sunday 14 June as planned. Join our Lizzie’s Calorie Free Lunch 2020 – a virtual experience at which no calories will be consumed!
Coronavirus and TSC: Information for the TSC community
Having TSC does not make you more likely than anyone else to catch coronavirus, and it does not necessarily mean that you are at greater risk of developing severe symptoms.
Postponement of TSC Conference in May
Unfortunately, in recognition of the evolving situation and the risks stemming from the Coronavirus pandemic (COVID-19), we have made the disappointing but necessary decision to cancel the TSC Conference due to take place in Sydney on 2 and 3 May … Read More
TSC Global Awareness Day is coming soon
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
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.
National Strategic Action Plan for Rare Diseases
Today the Hon Greg Hunt, Minister for Health, launched the first Australian National Strategic Action Plan for Rare Diseases at Parliament House in Canberra. This plan commits the Australian Government to action under three pillars: Awareness and Education … Read More
Rare Disease Day Event
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
Read our first TSC Research Round Up
TSC Research Round Up is a new enewsletter from TSA in which we present summary reports of some of the latest TSC-related research from Australia and around the world that we believe may be of relevance and importance to our TSC community.
How to get the most out of your GP
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.
Using the TAND checklist
While most paediatricians and child neurologists have become good at identifying and treating the physical manifestations of TSC, it remains difficult to identify and treat the neuropsychiatric issues commonly associated with TSC. Why the TAND checklist was developed In 2012, the … Read More
Everolimus and uncontrolled epilepsy associated with TSC: current perspectives
Up to 90% of patients with TSC have epilepsy and in over half of those, seizure control cannot be achieved by regular antiepileptic drugs. This is commonly known as uncontrolled, refractory, intractable, or drug-resistant epilepsy. Everolimus and sirolimus are both mTOR-inhibiting drugs … Read More
Read our survey results
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
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
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
Christmas gift tags on sale now
Order your Christmas Gift Cards from Tuberous Sclerosis Australia today. Each $9.95 pack contains 21 small gift cards with 3 different designs.
This Christmas, give a gift to TSA
This Christmas, give a gift of hope. By donating to TSA’s Christmas Appeal you can give hope to families like Oskar’s. Hope for the best life possible. Hope for new treatments. Hope for a cure.
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
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
New Disability & Rare Disease Report
Rare Voices Australia (RVA) has just launched a new report, Disability & Rare Disease: Towards Person Centred Care for Australians with Rare Diseases. The report highlights significant unmet need and a need for the health and disability sectors to collaborate to … Read More
Comedy for a Cure raises almost $27,000
We are thrilled to announce our first Sydney Comedy for a Cure raised almost $27,000. What a great night! Almost 200 guests gathered at Paddo RSL on Saturday 26 October to raise vital funds to help Australians living with Tuberous … Read 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’s Annual Report 2019
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
Do you need a holiday?
You have the chance to win an amazing 8-night accommodation package at the luxury Alamanda resort in Palm Cove.
Volunteer Administrative Support
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
TSA Survey 2019
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
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
Winner of the Elizabeth Pinkerton Memorial Award 2019
Tuberous Sclerosis Australia (TSA) is delighted to announce that Dr Fiona McKenzie, Geneticist at the King Edward Memorial Hospital for Women in Subiaco, Western Australia, is the winner of the 2019 Elizabeth Pinkerton Memorial Award. This award is given annually by TSA to a health professional in … Read More
TSA’s AGM 2019
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 nurse service is now taking calls
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
Join us to celebrate TSA’s achievements
TSA’s ANNUAL GENERAL MEETING Sunday 29 September at 3pm Balmain Library Meeting Room, 370 Darling Street, Balmain, Sydney, NSW 2041 President Debbie Crosby and the TSA Management Committee would like to invite all members to the AGM for 2019. The … Read More
EPISTOP research program results
One of the largest international scientific research programs on epilepsy has reached its end. The EPISTOP project proved that preventive treatment decreased the risk and severity of epilepsy. The results of the EPISTOP research will be used to develop a … Read More
Free Genetics Information Seminar
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
Final Days to make your nominations for the 2019 Elizabeth Pinkerton Memorial Award
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
Siblings Australia Workshops
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
Save the date for Sydney’s first Comedy for a Cure
Save the date for Sydney’s first Comedy for a Cure on Saturday 26 October. The event will feature a fantastic line up of comedians with Peter Berner headlining the show. We will harness the power of laughter to raise critically needed funds for people living with TSC.
New helpline for Australian’s living with epilepsy
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.
Lizzie’s Lunch raises record $22,000
The 6th annual Lizzie’s Lunch was held on Sunday 2 June at Hills Lodge. It was a fantastic event that was made possible thanks to the extraordinary efforts and dedication of Lizzie’s mum, Sue Pinkerton. But there were many people … Read More
Make your tax time donation to TSA today
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.
TSA’s new telehealth nurse
We are very excited to announce that Kim Kerin-Ayres will be joining TSA as our new telehealth nurse.
Can we predict which children with TSC are more likely to develop autism?
A recently published study from the global EPISTOP study suggests that we can use developmental assessments of babies as young as six months old to predict which will go on to be diagnosed with autism spectrum disorder (ASD).
Lizzie’s Lunch is a SELL OUT
We hope you have already purchased your tickets, as we’re delighted to report that Lizzie’s Lunch is now a SELL OUT. We look forward to seeing everyone on Sunday at this fabulous fundraiser event.
Positive Phase 3 Trial Results for EPIDIOLEX®
GW Pharmaceuticals has announced positive top-line results of a Phase 3 clinical trial of EPIDIOLEX® (cannabidiol or CBD) CV in the treatment of seizures associated with Tuberous Sclerosis Complex (TSC). This is exciting news and a step further along the … Read More
Nominations for the 2019 Elizabeth Pinkerton Memorial Award
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
TSC Connect: Brisbane Saturday 25 May 2019
You are invited to join TSA at our very first Connect event for adults living with TSC. The event will include TSC expert speakers, a chance to meet and connect with others living with TSC and an opportunity to discuss what further support … Read More
TSC Global Awareness Day celebration in Perth
Please join TSA’s Regional Contact in Perth, Nicole Stone, for a TSC Global Awareness Day get together. The aim of the event is to connect with other families living with Tuberous Sclerosis Complex in Western Australia. Date: Thursday 16th May … Read More
Purchase your tattoos today
TSC Global Awareness Day is less than a month away. Please get involved by purchasing your #Tatts4TSC temporary tattoos today to get involved.
Reach Out, April 2019
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
Nominate a health professional for the Elizabeth Pinkerton Memorial Award
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. Elizabeth (Lizzie) Pinkerton (1984 – 2010) had … Read More
Lizzie’s Lunch tickets now on sale
Please join us for the 6th annual Lizzie’s Lunch. This year we have locked in a celebrity MC to join us – buy your tickets now so you don’t miss out.
TSA Telehealth Nurse
It was announced today that TSA is one of 11 patient organisations that will receive funding support for a part-time telehealth nurse under the Patient Pathways program developed by the Centre for Community-Driven Research (CCDR). This pilot project is intended … Read More
Kalymnian Club donates $4,600
If you live in Melbourne and love cars and bikes please go along on Sunday 31 March and support this fundraiser for TSA.
Celebrate TSC Global Awareness Day
Get involved in TSC Global Awareness Day on 15 May with #Tatts4TSC
Understanding TSC associated epilepsy through the TOSCA natural history study
This study helps us understand epilepsy in people with tuberous sclerosis complex (TSC) by analysing the experiences of 1852 people with both TSC and epilepsy involved in the TOSCA project.
Welcome Jackie
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 Lizzie’s Lunch
Our 6th annual Lizzie’s Lunch will be held on Sunday 2 June, 2019. The event begins at midday at the Grand Mercure Hills Lodge, Castle Hill. Mark the date in your diary. We hope to see you there.
Volunteers needed
Comedy for a Cure is coming to Sydney in October 2019 and TSA needs your help to put on this great event with and for the TSC community.
Baker McKenzie partner with Tuberous Sclerosis Australia
TSA are delighted to announce our new partnership with global law firm Baker McKenzie. After a competitive internal selection process, TSA was selected as one of three national charities Baker McKenzie will work with for the next three years. Baker … Read More
Disabled Children’s Foundation supports TSA
We are delighted to announce the Disabled Children’s Foundation has given a generous donation to Tuberous Sclerosis Australia (TSA). Thank you to everyone at the Disabled Children’s Foundation for choosing to support children with TSC. A $3,000 grant was recently donated … Read More
Save the date for TSC Conference 2020
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!
We’re searching for TSA’s next general manager
Tuberous Sclerosis Australia is searching for our next general manager. Since 2011 Clare Stuart has played a critical role in the development, growth and success of our organisation. Clare believes this is the right time for her to step down … Read More
New epilepsy treatment added to pharmaceutical benefits scheme
We are pleased to share news that everolimus (Afinitor) for epilepsy has been added to Australia’s pharmaceutical benefits scheme (PBS). Today the Federal Health Minister, the Honourable Greg Hunt announced that this medicine to treat seizures for people with TSC … Read More
nib foundation partners with TSA
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
Review of TSA’s Sydney TAND event
Recently Selina, mother of Liam who lives with TSC attended and spoke at our 2018 Sydney TAND event. Selina writes a blog about the funny parts of life with TSC and autism. Here is what she had to say: “Mr … Read More
This Christmas, give a gift that changes lives
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.
Comedy for a Cure raises over $12,000
TSA’s first Australian Comedy for a Cure was held in Melbourne on 6 October 2018. It was a fantastic night and we are thrilled to announce over $12,000 was raised to help fund TSC research here in Australia.
Australian research into TSC and autism continues
Dr Bec Mitchell continues her valuable work on the DOTS* study that is increasing our knowledge of the risk factors for autism in children with TSC and of possible interventions for children at risk of autism. Dr Mitchell is a … Read More
Join us in Sydney to launch our new children’s book
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
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
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
TSC in the news in Central West NSW
Thank you Anna and Marian for inspiring a great story on TSC and the importance of fundraising for TSC research in Australia. Take a look at the unique way they are helping TSA. Their efforts are inspired by Anna’s son … Read More
Dr Orli Wargon receives 2018 Elizabeth Pinkerton Memorial Award
Dr Orli Wargon, a paediatric dermatologist at Sydney Children’s Hospital, is the recipient of the 2018 Elizabeth Pinkerton Memorial Award. This award is given annually by Tuberous Sclerosis Australia to a health professional in recognition of their efforts to improve … Read More
Proposed TSA Constitutional Changes
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:
ADELAIDE 26 AUGUST
BRISBANE 8 & 9 SEPTEMBER
SYDNEY 22 SEPTEMBER
New epilepsy treatment to become affordable for Australians with tuberous sclerosis
We are pleased to share news that Everolimus (Afinitor) for epilepsy has been given a positive recommendation by the pharmaceutical benefits advisory committee (PBAC). This is a recommendation to the Federal Health Minister to add this medicine to the pharmaceutical … Read More
We’re joining The Growth Project
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
Publication of new research on skin treatments for TSC
Today we celebrate the academic publication of results from the Treatment trial. This research developed a topical cream to treat the small tumours that grow on the face of people with tuberous sclerosis. While these tumours, called angiofibromas, do … Read More
A great result at 5th annual Lizzie’s Lunch in Sydney
It was wonderful to have so many of family and friends join us at our annual Lizzie’s Lunch fundraiser on Sunday. It was a fantastic day and we are thrilled to announce over $19,000 was raised to help individuals facing … Read More
Reach Out, April 2018
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
Get involved in TSC Global Awareness Day and join #Tatts4TSC
Do something fun and get a tattoo for tuberous sclerosis complex (TSC) awareness.
Don’t worry, they’re just temporary!
Help NSW Health improve their storage of genetic counselling data
Invitation to TSC families in NSW and ACT to participate in this focus group study.
Tickets now available for Lizzie’s Lunch
We’d love to have you join us on Sunday 3 June in Sydney for this wonderful and inspiring event.
New webinar for health professionals
Leading TSC neurologist, Dr Darcy Krueger, has presented a webinar designed for professionals. It provides an overview of TSC diagnosis and genetics and more detailed information on managing SEGAs and epilepsy. Access the webinar today
Our Christmas appeal raises over $5,000
Kate and Clare are thrilled to announce we raised $5,272 to help families at the time a devastating diagnosis of tuberous sclerosis complex (TSC) is given. What a fantastic response from our TSC community. You once again have shown us … Read More
Congratulations to Drs Julian Sampson and Chris Kingswood
Tuberous Sclerosis Australia (TSA) would like to congratulate Professor Julian Sampson and Dr Chris Kingswood on being awarded the Manuel R. Gomez Award by the global tuberous sclerosis complex (TSC) community. The Gomez Award is given in recognition of those … Read More
Meet the Researcher: Denise Chan
Dr Denise Chan spoke with TSA’s General Manager, Clare Stuart First of all, congratulations on your recent travel award to the International TSC Research Conference. What was your TSC research project about? Thanks! I am a paediatric neurology fellow at … Read More
Access to mTOR Inhibitors for Epilepsy
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
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
You can help us tell the Australian government to fund TSC medicines
In December, the Pharmaceutical Benefits Advisory Committee (PBAC) will consider an application from Novartis for Everolimus/Afinitor to be listed on the Pharmaceutical Benefits Scheme (PBS) for people with TSC who are experiencing seizures that do not respond well to available … Read More
Congratulations Dr Helen Whitford
Dr Helen Whitford, a staff specialist in respiratory medicine at the Alfred Hospital,is the recipient of the 2017 Elizabeth Pinkerton Memorial Award. This award is given annually by Tuberous Sclerosis Australia to a health professional in recognition of their efforts to … Read More
Reach Out, October 2017
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:
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
Melbourne TSC Information Day
You are invited to join TSA at our 2017 information day in Melbourne for people with TSC and their families. The event will include TSC expert speakers, a chance to meet others living with TSC and the presentation of the … Read More
TSC Heroes run City to Surf
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
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
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
Sue and Ross Pinkerton awarded life membership of TSA
Tuberous Sclerosis Australia are proud to announce Sue and Ross Pinkerton as life members of TSA. This award goes some way to acknowledging their amazing contribution over three decades to the Australian TSC community. At our annual fundraiser, Lizzie’s Lunch, we … Read More
Webinar recording now available: emerging treatment options for epilepsy in TSC
Thank you to Dr John Lawson for giving his time and expertise for this webinar. We’re looking forward to our second webinar on the genetics of TSC on Friday 7th July at 12:30pm AEST. For more information on TSC and … Read More
Help us secure funding for new TSC epilepsy treatment
In July, the Pharmaceutical Benefits Advisory Committee (PBAC) will consider an application from Novartis for Everolimus/Afinitor to be listed on the Pharmaceutical Benefits Scheme (PBS) for people with TSC who are experiencing seizures that do not respond well to available … Read More
Improve our understanding of difficult behaviours in TSC
Many families with TSC struggle with challenging behaviours. This study aims to understand not only which behaviours are associated with Tuberous Sclerosis Complex, but also which behaviours are of most concern to parents and caregivers. Please see the flyer for more … Read More
TSC online education events
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
2017 Lizzie’s Lunch
The 2017 Lizzie’s lunch will be on Sunday 4 June from 12.30pm at our new venue, The Hills Lodge in Castle Hill.
Grab yourself and nine friends to make a table.
Reach Out, April 2017
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
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
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
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.
Congratulations Dr Simon Harvey
Dr Simon Harvey, paediatric neurologist at Royal Children’s Hospital in Melbourne, is the recipient of the 2016 Elizabeth Pinkerton Memorial Award. This award is given annually by Tuberous Sclerosis Australia to a health professional in recognition of their efforts to … Read More
Research News: October 2016
A selection of recently published articles with a focus on high impact and Australian TSC research. Summaries written by Kate Fessey and Clare Stuart. This article was first published in the October 2016 issue of Reach Out, TSA’s twice-yearly magazine. … Read More
Emerging treatments for epilepsy in people with TSC
Clare Stuart, general manager, TSA. In addition to early surveillance and surgery, there are two other areas of research that have the potential to deliver new treatment options for people with epilepsy caused by tuberous sclerosis: mTOR inhibitor medicine and … Read More
Advances in epilepsy surgery in TSC
From an interview with Dr Simon Harvey, paediatric neurologist and director of the Children’s Epilepsy Program at Royal Children’s Hospital, Melbourne. This article was first published in the October 2016 issue of Reach Out, TSA’s twice-yearly magazine. What is epilepsy … Read More
New approach to treating epilepsy in babies with TSC shows promising early results
From an interview with Dr Kate Riney, paediatric neurologist and TSC clinic lead at Lady Cilento Children’s Hospital, Brisbane. This article was first published in the October 2016 issue of Reach Out, TSA’s twice-yearly magazine. Can you describe this new … Read More
2016 Annual Report available online now
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.
Your Christmas cards can help families living with TSC
Buy your Christmas Cards from Tuberous Sclerosis Australia, with 50% of the pack cost funding support and information services provided by Tuberous Sclerosis Australia. That’s a lot more than many charity cards that only give a few cents for each … Read More
Reach Out,October 2016
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
Debbie Crosby recognised as a finalist in Volunteer of the Year awards
Congratulations to Debbie Crosby, one of TSA’s most dedicated volunteers, on being a finalist in these awards. We’ll let her nomination explain why she’s such a deserving recipient. About Debbie: Debbie is the President of Tuberous Sclerosis Australia(TSA) and goes … Read More
Updated information on topical mTOR inhibitor treatment for facial angiofibromas
We’ve updated our information on the availability of this new treatment for facial angiofibromas.
Join TSA at the Lord Mayor’s Picnic in Sydney for New Year’s Eve
Tuberous Sclerosis Australia have 15 tickets for the 2016 Sydney New Years Eve Lord Mayors Picnic. It is held in the Royal Botanical Garden from 5pm -9.15pm and is an amazing event for families with children who have special needs. … Read More
Congratulations to Taylor on her paralympic silver medal
Taylor Doyle is a 23 year old woman from Sydney with tuberous sclerosis complex. The TSC community around the world celebrated her silver medal in long jump at the Rio Paralympics in September.
New clinical guidelines published for lymphangioleiomyomatosis (LAM)
The American Thoracic Society (ATS) and the Japanese Respiratory Society (JRS) have published new clinical practice guidelines for the diagnosis and management of lymphangioleiomyomatosis (LAM), a rare lung disease that primarily affects women of child-bearing age and is associated with … Read More
Join us to celebrate TSA’s achievements
Annual General Meeting and dinner on Sunday 18 September from 5pm in Sydney You are invited to join the TSA Management Committee at our upcoming AGM. The event is chance to review our accomplishments in 2014/15 and discuss future plans. … Read More
Nominations are open for the 2016 Elizabeth Pinkerton Memorial Award
The Elizabeth Pinkerton Memorial award is given annually by TSA to a health professional to recognise their efforts to improve the lives of TSC affected families in Australia. Nominations close on Friday 29th July.
Lizzie’s Lunch fundraising event in Sydney on 26 June
Lizzie’s Lunch is held each year in Sydney. So far the event has raised more than $21,000 for TSA’s support services. Lizzie Pinkerton was a vibrant young girl with a cheeky sense of humour. She lived with Tuberous Sclerosis (TSC) … Read More
Reach Out, April 2016
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
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
Tori inspires Adelaide GP to become a TSC hero
Dr Jessica Smith is a GP who provides medical care to people with an intellectual disability. Inspired by Tori, one of her patients with tuberous sclerosis, Jessica ran in the recent Clare Valley half marathon. Her campaign raised over $2,000 … Read More
Save the date: 2016 Annual General Meeting
The 2016 Annual General Meeting of Tuberous Sclerosis Australia Inc. will be held on Sunday 18th September from 5pm at Rhodes Phoenix Chinese Restaurant in Sydney. This is an opportunity to celebrate the accomplishments of TSA, influence future plans and … Read More
Global Awareness Day – a chance to meet others living with TSC
Casual picnics will be held in many parts of Australia again this year. These 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 beneficial. … Read More
Help us find the next editor of Reach Out
After more than 10 years at the helm, David Matheson is retiring as editor of our twice-yearly publication, Reach Out. The volunteer editor of Reach Out coordinates contributions from TSA staff and volunteers and works with paid graphic designers to … Read More
Order TSC Awareness Cards
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
Shop for a cause at Diana Ferrari fundraising night
Sue’s Diana Ferrari Shopping Night will contribute to a new resource pack for general practitioners (GPs). Most GPs who care for a patient with tuberous sclerosis will not have heard of tuberous sclerosis complex (TSC) since medical school. They are … Read More
The availability of Topical Rapamycin
Topical Rapamycin is an experimental treatment for facial angiofibromas, which affect the majority of people with Tuberous Sclerosis. A formal clinical trial, funded by generous donors to Tuberous Sclerosis Australia, has completed at Sydney Children’s Hospital which aims to provide … Read More
Epilepsy and TSC Information Day in Brisbane
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
Congratulations to Dr Anne Halbert- the 2015 winner of the Elizabeth Pinkerton Memorial Award
The Elizabeth Pinkerton Memorial award is given annually by TSA to a health professional to recognise their efforts to improve the lives of TSC affected families in Australia. Dr Anne Halbert was presented with the 2015 award at the 2015 … Read More
Improve our understanding of the financial impact of TSC
Tuberous Sclerosis Australia, with thanks to the TSC Heroes, are proud to support this research project. Our partner in this project is the Australian Mitochondrial Disease Foundation and the research is being conducted by the Australian Paediatric Surveillance Unit, part … Read More
Send an electronic gift card and support families with TSC
Friends and family overseas and missed the deadline for international shipping? Can’t decide on a gift for the person who has everything? Need to buy a gift for the office Secret Santa? Or just left it to the last minute? … Read More
Join the TSA team
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
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
Australian TSC Conference in November 2015
Join us in Sydney on 14th and 15th November for our largest TSC meeting yet. With a line up of international and Australian TSC experts covering a wide range of topics, this meeting offers a medical and a family stream.
TSC International Meeting shares strategies for improving health care for people with TSC around the world
The Tuberous Sclerosis Complex International (TSCi) meeting in Windsor brought together TSC organisations from 22 countries to share knowledge and ideas and plan for future TSCi activities. The meeting welcomed representatives from Belgium, Brazil, Mexico, Russia, Slovakia and Switzerland for … Read More
TSC research community sets sights on prevention
A report from the 2015 International TSC Research Conference in Windsor, United Kingdom September 10-12th. From Treatment to Prevention, the global TSC research community asks if postponing the complications of TSC indefinitely is the path to a cure for TSC.
New information on mTOR inhibitor medicines for TSC
Tuberous Sclerosis Australia has published two new resources to help individuals with TSC and their families understand new medicines for TSC. Names of mTOR inhibitor medicines include Afinitor, Everolimus, Sirolimus, Rapamune, and Rapamycin. Read our updated information page on mTOR … Read More
My Sunshine: Success with new communication app
Kim Hoban, Kobi’s grandmother, Melbourne I want to share this success with the TSC community as it may help other kids that are non-verbal and their carers who are looking for a communication device. I am the sole carer of … Read More
Impact of TSC in Australia presented at TSC Research Conference in Windsor UK
Tuberous Sclerosis Australia (TSA) was represented at the recent international TSC research conference in Windsor, UK. This included presentation of results of the TSC family survey conducted by TSA in 2014. Thanks again to all the families who responded. Download … Read More
TSC Heroes City2Surf fundraising success
Sydney put on a beautiful day for the City2Surf on Sunday 9th August. Well done to Belinda and Darren for forming the TSC Heroes team this year and raising over $3,000 to help families living with tuberous sclerosis. They completed … Read More
Melbourne TSC family benefits from support from Brainwave
Kate Green, part of Tuberous Sclerosis Australia’s management committee, has been profiled along with her son Hamish in a Melbourne newspaper. The article promotes the fantastic support they receive from Brainwave. Thank you to Brainwave and all the other fantastic … Read More
Perth mum uses hemp oil to treat daughter with tuberous sclerosis
Joelle and Ava from Perth, Western Australia, have been featured in a Perth Now article describing the benefits that hemp oil has had for Ava. Hemp oil is not legal in Australia and has not been assessed by the therapeutic … Read More
Nominate a health professional for the Elizabeth Pinkerton Memorial Award
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. Elizabeth (Lizzie) Pinkerton (1984 – 2010) had … Read More
Successful Lizzie’s Lunch raises $11,000 to help families living with tuberous sclerosis
Thank you to everyone involved in Lizzie’s Lunch 2015. In 2014 the first Lizzie’s Lunch raised $10,000, this year the event raised $11,000. This funding goes to the information and support services used by people with tuberous sclerosis and their … Read More
Source Kids raises awareness of tuberous sclerosis
Thanks to Source Kids magazine and the Schilg family (including Georgina Schilg, TSA committee member and regional contact in Tasmania) for the fantastic article in the Autumn issue of this fantastic Australia-wide publication.
Join the TSA team to help families living with tuberous sclerosis
We’re looking for some new team members to join TSA. Can you offer your time and expertise? With only one part-time employee, TSA relies on the hundreds of volunteer hours donated to use each year. Can you join our team? … Read More
Sunshine Coast Daily profiles Lachlan
Read the full article at www.sunshinecoastdaily.com.au/news/rare-condition-but-on-improve/2656003/
May 15th is global awareness day for tuberous sclerosis complex
During May, TSC organisations around the world make an extra effort to raise the awareness of TSC in the wider community. For some people, global awareness day could be the first time they hear of TSC. We hope they are … 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
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
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
Good Friday appeal raises awareness of tuberous sclerosis
Thanks to Eloise and the Heaney family for their generous support of the Royal Children’s Hospital’s Good Friday Appeal and raising awareness of Tuberous Sclerosis. Read the full article.
Tuberous Sclerosis Australia submission to the global research plan for TSC highlights impacts of TSC on Australian families
The National Institutes of Health in the United States will host a workshop this month with TSC researchers from around the world to refresh the research plan for TSC. Tuberous Sclerosis Australia has made a submission to the workshop including … Read More
Help Sam and Sam get the medicines they need in the United Kingdom
Families living in the UK with Tuberous Sclerosis have asked for your help via the Tuberous Sclerosis Association. These families do not have access to mTOR inhibitor medicines, even though the medicine has been approved for use in the UK for over … Read More
#IAMTSC awareness campaign
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
May Global Awareness Day Picnics around Australia
To mark Tuberous Sclerosis Global Awareness Day, TSC affected families and other TSA supporters are invited to come along to a picnic in a city or town closest to you. If you would like to host a picnic, contact … Read More
A moment to be thankful on Rare Disease Day
This post is from Clare Stuart, General Manager at TSA. It does not constitute the official pronouncement of Tuberous Sclerosis Australia. We encourage your feedback in the comment to this post or by email. International rare disease day is often … Read More
Surfside community supports Tuberous Sclerosis Australia
The generosity and hard work of Ian and Sharron Bilsborough has resulted in $9,140 being raised for Tuberous Sclerosis Australia over the summer holidays. Along with their friends who holiday at the Surfside Caravan Lodge in Sussex Inlet NSW, this … Read More
Share your experiences of the financial challenges of TSC
In each edition of Reach Out, we publish the collective wisdom of TSC families from around Australia and New Zealand on a particular topic in a section called ‘Just between us’. You can read previous articles on topics such as … Read More
Western Australian women asked to participate in research on pre-natal testing
Mothers of children with Tuberous Sclerosis living in Western Australia are invited to be interviewed as part of a new research project at Curtin University. The researchers are particularly seeking families where the child’s diagnosis came with no family history … Read More
TAND checklist launched to help identify neuropsychiatric challenges in TSC
TAND stands for TSC Associated Neuropsychiatric Disorders and refers to the wide range of cognitive, behavioural and mental health challenges that people with TSC are at risk of. For many people with TSC the TAND aspects of TSC are of greater concern to them and their families than the medical aspects of TSC.
Global Awareness Day picnics to be held on May 17th around Australia
May 15th will be the third annual TSC Global Awareness Day. And for the third year we will celebrate with a series of social events around Australia. Our network of regional contacts are confirming details in their towns and cities … Read More
New guide to facebook use published by Tuberous Sclerosis Australia
We know that many people who have TSC, or care for someone with TSC use social media to connect with others in similar situation. We have published a new information page to help people who use Facebook for information and … Read More
TSC Heroes fundraising success
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
ABC Open celebrates Alex’s artistic talents
This beautiful story about Alex and his family celebrates his talent as an artist. Fiona is our regional contact in Queensland and happy to hear from anyone in QLD who needs some support or advice on living with TSC. Contact … Read More
Reach Out, October 2014
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
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
Tuberous Sclerosis journey explored in Queensland Theatre Company work
Todd MacDonald co-developed this Queensland Theatre Company work that explores his experience…
Changes to the name and rules of our organisation
The 2014 Annual General Meeting (AGM) of The Australasian Tuberous Sclerosis Society Inc will be held on August 17th at 12:30pm in Sydney. You can register to attend the AGM here. One of the items of business in this meeting … Read More
Bringing home some oversized luggage: Inspiration and a long to-do list
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
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
Nominate a health professional for the Elizabeth Pinkerton Memorial Award
The Elizabeth Pinkerton Memorial award is given annually by ATSS to a health professional to recognise their efforts to improve the lives of TSC affected families in Australasia. Elizabeth (Lizzie) Pinkerton (1984 – 2010) had Tuberous Sclerosis Complex and Polycystic … Read More
Improving the TSC knowledge of GPs
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
Our advocacy work continues with a submission on PGD
PGD stands for pre-implantation genetic diagnosis. It is a technology that can be used by people with Tuberous Sclerosis (TSC) who wish to have a child free of TSC. It is used in combination with IVF. Genea (previously Sydney IVF) … Read More
Reach Out, May 2014
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
Have your say on out of pocket health care costs
The Australian Federal Minister for Health the Hon. Peter Dutton has called for a national debate on making our health system more sustainable, and it is essential that people living with a health condition and their families are a key … Read More
Seeking volunteers for our family information review group
Are you affected by TSC or caring for someone with TSC? Are you passionate about making sure families like yours have access to accurate information about TSC that is also easy to understand? What will the volunteer role involve? All … Read More
Genetic Testing – a sister’s experience
I used genetic testing because my sister had TSC and I wanted to start a family of my own. Testing gave myself and my husband the re-assurance that we needed that our children wouldn’t have a higher risk of Tuberous … Read More
Reach Out, November 2013
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
New medicine for Tuberous Sclerosis to be subsidised by Australian government
Today the Federal Minister for Health, the Hon Peter Dutton, announced that the cost of Everolimus for Tuberous Sclerosis will be subsidised by the government through the pharmaceutical benefits scheme (PBS). This medicine is approved in Australia for the treatment … Read More
Publication of newly updated clinical consensus guidelines for the diagnosis, surveillance and management of TSC
The newly updated clinical consensus guidelines for the diagnosis, surveillance and management of tuberous sclerosis complex (TSC) have been published. This major revision reflects the significant medical advances since the first guidelines were published in 1998. To communicate the recommendations … Read More
Help us find ATSS’s next volunteer finance manager
As the ATSS Committee plans for the future growth of ATSS, we’re looking for a new volunteer to help us manage financial aspects of our organisation. A full job description is available below; the role would suit an accountant or … Read More
Order a DVD of presentations from the 2013 ATSS Conference
At the 2013 ATSS Family Conference, many sessions were recorded. The following are available on DVD and online: Professor Petrus de Vries, speaking about how TSC can affect behaviour, cognition, learning and mental health. Petrus is a world-leading researcher into … Read More
Media Coverage of early trials of new medicine to treat Epilepsy in Tuberous Sclerosis
The academic journal, Annals of Neurology, has recently accepted a paper by researchers at Texas Children’s Hospital, Baylor College of Medicine and Cincinnati Children’s Hospital. This small study shows promising results in a small number of TSC patients being treated … Read More
Conference reveals promising future research directions in TSC
Clare Stuart, ATSS Project Manager, recently attended the 2013 International Research Conference on Tuberous Sclerosis Complex and Related Disorders. Hosted by the TS Alliance, this conference was themed “Molecules to Medicines”. Clare’s travel was sponsored by TSC International. It is … Read More
Sydney gym raises more than $2,500 for ATSS
The brain child of Hayley Hill, ATSS volunteer treasurer, Genesis Gym in Blacktown held a fundraising event on 23rd May. The event included personal training sessions offered for a donation, a fantastic raffle and sponsorship of some of the trainers … Read More
Running the City 2 Surf for ATSS
Families and friends of ATSS will be walking or running the Sydney city2surf this August. We’d love for you to join the team. You can join or track the team’s preparations and support their quest to complete the 14km at … Read More
Say a big thank you to unpaid carers with a nomination for a 2013 NSW Carer Award
The NSW Carers Awards recognise and celebrate carers dedication in supporting people who need care because of disability, mental illness, chronic health condition, dementia or because they are frail and aged. Nominations are sought across NSW in the following categories: … Read More
Successful picnics held around Australia and New Zealand
Thank you to our volunteer regional contacts who organised picnics in their local areas on May 19th. For many families, meeting others living with TSC and sharing stories and information is incredibly helpful. Picnics were held in (from east to … Read More
ATSS welcomes PBAC recommendation for Everolimus
The first ever treatment specifically for Tuberous Sclerosis Complex (TSC) has recently been recommended for inclusion on the pharmaceutical benefits scheme (PBS), making it accessible to those living with the impacts of this devastating disease. One of the difficult to … Read More
Are you in New Zealand? We’re here to help you too
Historically, ATSS activities have focused on the Sydney area. With limited resources and volunteers, we’ve tried to reach out to other parts of Australia and New Zealand and are doing better at this than ever before: We have a network … Read More
NetApp volunteers lend a hand to TSC Family
In March, Sydney mother of two, Leanne Park, was grateful to receive a helping hand from staff volunteers from NetApp. Leanne’s son Luke has Tuberous Sclerosis and were one of the stars in ATSS’s 2007 DVD production ‘Tuberous Sclerosis: You … Read More
Reach Out, May 2013
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
Workshops for Victorian parents of a child with a disability
Making it Possible Parent Workshop How you can think, plan and achieve goals for your child and family The Association for Children with a Disability is running a series of workshops around Victoria. How can you create a fulfilling life … Read More
May 15 is TSC Global Awareness Day
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
Free parenting workshops for Queensland families
Parents and caregivers of children with disabilities are invited to complete a survey about their parenting experience by going to www.mysay.org.au. You can also register your interest in receiving free Stepping Stones Triple P parenting programs. The current phase of … Read More
Branching Out in Perth
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
Video: Update on Diagnostic Criteria for Tuberous Sclerosis
The TS Alliance has provided this recording of a recent research webinar. It covers the changes to the diagnostic criteria that were agreed at the recent clinical consensus conference held in Washington DC. If you are interested in how diagnostic … Read More
2012 TSC Clinical Consensus Conference Held in Washington, DC
On June 14 & 15, 2012, more than 60 health care professionals, each having expertise treating one or more aspects of tuberous sclerosis complex (TSC), met in Washington, DC to update consensus recommendations for the diagnosis, surveillance, and management of … Read More
World leading researcher in TSC to speak at Perth Conference
If you were considering coming to Perth in March for the 2013 ATSS Conference, here’s two more good reasons! Reason 1: Professor Petrus deVries, a talented speaker and researcher into the ways that TSC affects learning, cognition, behaviour and mental … Read More
Medical treatment for SEGAs considered for listing on the Australian pharmaceutical benefits scheme
Everolimus is an mTOR inhibitor medicine and may be an effective treatment for some people with Subpendymal Giant Cell Astrocytomas (SEGAs) caused by Tuberous Sclerosis (TSC). Everolimus is marketed by Novartis under the brand name Afinitor. In November 2012 the … Read More
Farewell Sue Pinkerton
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
Help ATSS win thousands of dollars
We need less that 1 minute of your time. Tupperware Australia is running a competition on Facebook and ATSS has made it to the final round. Monica, mother to a TSC affected child, has nominated ATSS to be the next … Read More
Knowledge Gained and Connections Made in Melbourne
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
Research Study asking for survey respondents
Are you a parent or caregiver to a child with Tuberous Sclerosis? The University of Newcastle, University of Tel Aviv, Duke University, and the Children’s Hospital of Philadelphia are interested in your experiences regarding the diagnosis of your child. We … Read More
EXIST-1 Trial Publishes long term safety data of new treatments for Tuberous Sclerosis
Efficacy and safety of everolimus for subependymal giant cell astrocytomas associated with tuberous sclerosis complex (EXIST-1): a multicentre, randomised, placebo-controlled phase 3 trial (Online release) Released online this week, the EXIST-1 team have published long term safety data of the … Read More
Elliott’s daughter has Tuberous Sclerosis. So he’s running a triathlon
Inspired by his daughter’s own achievements, Elliott Cunnew is running, cycling and swimming for ATSS in his first triathlon. He’s getting close to his $1000 fundraising target, can you help him? Elliott’s daughter, Amelia, has Tuberous Sclerosis. She was diagnosed … Read More