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.
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
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.
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.
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
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.
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.
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.
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.
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!
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
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
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
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.
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
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
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
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
Tuberous Sclerosis Complex International (TSCi) invites you to participate in a brief worldwide survey about accessing medications for tuberous sclerosis complex (TSC). The survey will take 5-10 minutes to complete. It is anonymous, your answers will not be linked to any information that … Read More
If you are a young adult aged 18-30 living with TSC in Australia or New Zealand we’d like to know if you’d be interested in meeting up online with other young adults also living with TSC? If being part of … Read More
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.
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.
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
TSA’s AGM All members are invited to attend the Annual General Meeting (AGM) of Tuberous Sclerosis Australia Inc. which, in accordance with Fair Trading NSW COVID-19 guidelines, will be held via zoom on Sunday 11 October at 3pm. If you … Read More
TSA 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
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
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
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
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
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.
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.
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
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
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!
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
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
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
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
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.
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.
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
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
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.
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
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
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).
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
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
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
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.
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
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
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
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
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
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
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
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
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
Everyone who completed TSA’s 2019 survey went into the draw for a chance to win one of two $100 gift vouchers for Westfield. Congratulations to our winners Nicole Stone in Western Australia and Rob Rossano in New South Wales. Thank … Read More
Thanks to everyone who has already completed TSA’s 2019 survey. This is the last week to give us your feedback. Please follow this link to fill out the survey: https://www.surveymonkey.com/r/TSASurvey2019 Everyone who participates in this survey has the opportunity to go into the prize draw to … Read More
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
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
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 for 2019 is now available. The report charts our activities and successes this year which have been made possible thanks to the support of our fantastic TSC community. In response to feedback from our members about good … Read More
The TSA 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 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
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
Thanks to those who were able to attend TSA’s AGM last Sunday. It was a positive and productive meeting and we are delighted to welcome Miriam Chalk and Rob Haggett as new committee members and Alison McIvor as a re-elected … Read More
TSA’s new nurse service, run by Kim Kerin-Ayres is a free, confidential information and support service to support you with information, links to practical support and to help you live well with TSC. Kim can help you with any questions … Read More
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
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
Do you or a member of your family have a genetic condition? Would you like to understand more about genes, genetic testing and research? Genetic Alliance is running a free information seminar on Wednesday 30 October 2019 from 10am to … Read More
The Elizabeth Pinkerton Memorial Award is presented annually by Tuberous Sclerosis Australia to a health professional to recognise their efforts in improving the lives of TSC-affected people and their families in Australia. Thank you for the nominations we have already … Read More
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
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.
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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, 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.
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
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.
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
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
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, 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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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.
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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 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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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 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.
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
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
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
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
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
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
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
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.
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
Early in 2012, Afinitor was approved by the Therapeutic Goods Administration (TGA) for: “the treatment of patients with subpendymal giant cell astrocytoma (SEGA) associated with tuberous sclerosis (TS) who require therapeutic intervention but are not candidates for curative surgical resection.”
Unfortunately, the medicine can cost more than a thousand dollars per month for just one patient. Because the treatment is ongoing, Afinitor is very expensive for the patient or their hospital.
Comments form TS affected families would be welcomed by the Pharmaceuitcal Benefits Advisory Committee who make decisions about whether to list the medicine on the Pharmaceutical Benefits Scheme. Your comments need to be submitted by 10th October 2012.
Spots are available to go to a ATSS Family Camp in Newcastle, NSW on Mon 26 – Fri 30 November 2012. The camps are run by the University of Newcastle and specific to families of a child with a rare … Read More
Information from the clinical trials team at Sydney Children’s Hospital for families interested in participating in research into the topical use of rapamycin to treat angiofibromas.
TS Alliance has produced these two videos which include Dr Darcy Krueger discussing both sleep and anxiety in TSC with Brooke Simsa, who has Tuberous Sclerosis. In addition, the “Healthy Body, Healthy Mind” documentary series has produced an episode about … Read More
The ATSS Annual reportswere presented at the 31st Annual General Meeting of ATSS, held on Sunday 12th August. The reports provide a good overview of the achievements of the 2011-2012 year for ATSS. 2011 2012 ATSS Annual Reports
Three years of fundraising has led to Sydney Children’s Hospital being funded by ATSS to take part in the first randomized controlled trial for the topical use of Rapamycin for angiofibromas, the skin condition that affects up to 90% of people with Tuberous Sclerosis Complex. Thank you to the hundreds of people that organized fundraising activities and donated. Over $200,000 was raised; however, the average donation was under $100.
More than 120 people, from every state and territory of Australia as well as New Zealand, gathered in Sydney in October for the 2011 Family and Medical Conference. Highlights included the high calibre of international and local speakers, the varied and comprehensive programme and the opportunities for all attendees to share experiences.
Clare Stuart (nee Pinkerton) started as ATSS’ first Project Officer in November 2011. Clare has commenced work on two projects: Rebuild of the ATSS website, transforming it into an online directory to help TSC families share resources; The 2012 Family Conference, being held in Melbourne on 2nd or 3rd June.
On Sunday 12th August, ATSS will have a Seminar Day at Sydney Children’s Hospital. The day will include: The ATSS Annual General Meeting Professor Ernie Sommerville, speaking about what a neurologist does when seizures cannot be controlled Dr David Mowat, … Read More