Tuberous Sclerosis Australia | Non-profit organisation

Tuberous Sclerosis Australia

Phone: 1300 733 435 (Australia Only)

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24.01.2022 Have you signed up to be part of TSA's zoom event happening next Wednesday evening? Dr Vanessa Sarkozy from SCH will be presenting on neurodevelopmental disorders in children with TSC. There is still some spots available but you must register. This is a free event for TSA members.

23.01.2022 Have you got your tickets to our upcoming virtual event, Comedy for a Cure 2020? Tickets start from just $40 and can be purchased at www.comedyforacure.org.au. There are lots of great prizes to be won like cases of wine, designer handbags, chocolate hampers, weekends away and much more. Please join us and encourage your family and friends to come along too.

23.01.2022 Following 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. You can check out this link on our website for her recommendations.

23.01.2022 Even at the best of times, life with TSC in your family can feel like a rollercoaster of uncertainty. Tenacity, optimism and hardiness can all help. Join professional trainer and TSC dad, Rob Rossano on September 16th at 7:00 PM where he will share skills that can help increase mental toughness and resilience so that we might better cope with all the uncertainty. This zoom education event is free for TSA members and is suitable for family members and people living with TSC of all ages. Register now to secure your spot.

22.01.2022 To celebrate her birthday this year Pearl asked family and friends to donate to TSA in lieu of giving gifts. Pearl wanted to support our work in honour of her granddaughter Roxie who lives with TSC. So far she has raised $1,500 just by adding a donate button on her Facebook post. What a wonderful gift for people impacted by this devastating disease. Thank you, Pearl, and happy birthday!

21.01.2022 Do you know about the TAND checklist (TAND stands for TSC Associated Neuropsychiatric Disorders)? In this article, Prof. Petrus De Vries shares tips on the best use of this checklist of which the primary purpose is to get doctors and families to talk to each other, identify issues and prioritise what to do next. If you've not seen it before, we hope you find it helpful.

19.01.2022 Be a TSC Hero! Join the first virtual City2Surf for TSA - https://mailchi.mp//be-a-tsc-hero-join-the-first-virtual-c

19.01.2022 Just a reminder that all TSA members are invited to attend our Annual General Meeting (AGM) which will be held via zoom on Sunday 11 October at 3pm. If you would like to attend the AGM, please send an email to [email protected] and we will send you the link to the meeting.

14.01.2022 Save the date for our virtual Comedy for a Cure: Saturday, 5th December 2020 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.

14.01.2022 Get your running shoes on and raise funds for TSA! Whilst most of our TSC Hero events have been cancelled this year due to COVID-19, we are delighted to share that the City2Surf is going virtual. On Sunday 18 October 2020 you can join the 50th anniversary of the World’s Largest Fun Run. You can plan your own route in your own neighbourhood as this famous event becomes a "virtual" race for the first time. Entries are now open. Sign up to be a hero for the person you know living with TSC and you'll receive a free TSC Heroes T-shirt.

13.01.2022 Read all the latest news from TSA in our September e-newsletter. In this edition, you'll find out how to register for our upcoming Zoom education events, be part of our first virtual Comedy for a Cure event, and where to view our new Information Page on emerging challenging behaviours in young children and more. https://mailchi.mp/tsa.org.au/e-news-september-2020

12.01.2022 Tuberous Sclerosis Complex is no laughing matter. But we can harness the power of laughter to raise critically needed funds to improve the lives of everyone in Australia living with TSC. Join us on Saturday 5th December at 7.30pm for an online event. Please buy your tickets today at www.comedyforacure.org.au

11.01.2022 Do e-newsletters from TSA sometimes mistakenly end up in your junk folder? To avoid this you can simply add our email address of [email protected] to your list of safe senders. For more information on how to do this please click below.

10.01.2022 Do you want to know how to take beautiful photos of your child with rare disease? Do you live in Western Australia? Genetic and Rare Disease Network are running a FREE rare disease photography workshop this weekend. Rachel and Nathan will work with a small group, teaching you to capture positivity, joy and beauty with your own equipment (even your phone). To be part of this wonderful, positive experience all you need to do is register your interest at https://gardn.org.au/events/events-calendar/ 10 lucky people will be selected by raffle to participate.

10.01.2022 Autism Spectrum Australia (Aspect) is running several free webinars over the next few months. An estimated 40-50% of children with TSC develop autism so we thought our TSC Community may benefit from these events. Aspect is Australia’s largest service provider for people on the autism spectrum, theyrun informative events by qualified presenters specialising in autism.

09.01.2022 Mobility and Accessibility for Children in Australia (MACA) is a not-for-profit organisation dedicated to supporting and advocating for the right to safe and accessible transport for children with disability (and/or medical conditions). If you are a parent who transports children with disability and/or medical conditions, please consider clicking below to complete their national survey. Thank you.

08.01.2022 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.

07.01.2022 We have two education events coming up in September The first is on Resilience and living with TSC and is happening on Wednesday 16th September 7pm ACT/NSW/QLD/TAS/VIC | 6.30pm NT/SA | 5pm WA. In this session, professional trainer and TSC dad, Rob Rossano will share some skills that can help you increase your mental toughness and resilience so that you might be better able to cope with all the uncertainty. Click below to register.

06.01.2022 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. You don’t have to have a specific question or issue you want help with you can just talk about how you are feeling. You can reach Kim on 1300 733 435 or at [email protected]

06.01.2022 Next year TSA will be marking 40 years since its inception. That’s 40 years of helping and supporting our TSC Community. We’ve got some big plans to celebrate which we will announce in the new year. For now, we’d like to hear the stories of people living with TSC who are turning 40 in 2021, or already in their 40’s to share in our next edition of Reach Out. If you or someone you know fits these criteria please get in touch. Post a comment below, send us a private message or email [email protected]

05.01.2022 All TSA members are invited to attend our Annual General Meeting (AGM) which, in accordance with COVID-19 guidelines, will be held via zoom on Sunday 11 October at 3pm. If you would like to attend the AGM and have your say on several proposed changes to TSA’s Constitution, please send an email to [email protected] and we will send you the link to the meeting.

04.01.2022 Do you or someone you love have a disability? Have things changed for you because of coronavirus (COVID-19)? Do you need support in a language other than English? Help is available. Call the Disability Information Helpline on 1800 643 787 and ask for an interpreter, or call Translating and Interpreting Services on 131 450 and ask for the Disability Information Helpline on 1800 643 787. Information about the Disability Information Helpline is also available in 63 languages. Visit www.dss.gov.au/disabilityhelp for more details. #DisabilityHelp

04.01.2022 Many children with TSC experience neurodevelopmental disorders. Register now for our upcoming zoom education event where Dr Vanessa Sarkozy, Developmental Paediatrician at Sydney Children’s Hospital who will help you understand surveillance, screening and diagnosis of neurodevelopment disorders in TSC children and how to access to early intervention and support, and much more. Register now at: https://tsa.org.au/identifying-and-accessing-intervention-/

02.01.2022 Tickets are on sale now to our virtual Comedy for a Cure. Please join us for an online event that will harness the power of laughter to raise critically needed funds to help people affected by a rare and devastating disease, Tuberous Sclerosis Complex (TSC). For more information and to purchase tickets visit www.comedyforacure

02.01.2022 Could you be 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, like little Hudson.

01.01.2022 Our August 2020 newsletter is now available. Read all the latest TSA news featuring upcoming online education events, save the date for Comedy for a Cure, and our latest information page.