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TSCNZ President Helen Willacy will be at Terra Viva Cafe, 242 Roydvale Avenue, Burnside, Christchurch from 10:30am on Saturday 11th October and would love to meet up with Canterbury based individuals and families living with TSC for a coffee and a chat. The management committee are looking at planning our next national conference in Christchurch in October 2025 so we would really appreciate some ideas about venues, speakers, funders and any other local knowledge. Please email info@tsc.org.nz if you are planning to come along.

TSCNZ President, Helen, was nominated for a Rare Disorders 25th Anniversary award. Awards were presented at a special ceremony at Government House by the Governer General, Her Excellency The Rt Hon Dame Cindy Kiro. Helen's nomination recognised her outstanding contributions to improving the health and wellbeing of people living with rare disorders through her role at TSCNZ. Read more about the event on Rare Disorders NZ's website and Faceboo k. Learn about Helen's TSC journey on our new webpage of TSC Stories .

Tom, our wonderful TSCNZ Secretary is climbing Mt Maling [height 1825 metres] in the South Island to raise money for TSC. We're incredibly grateful to Tom for this fundraising and all the amazing voluntary work he does for us. Please join us in wishing him and his sons all the best for the climb! https://givealittle.co.nz/fundraiser/support-tom-in-his-climb-for-tuberous-sclerosis Donations help us continue to: - Provide email and phone support for TSC families - Maintain the TSCNZ website - Produce and distribute TSC Resources - Hold conferences and seminars - Advocate with Rare Disorders NZ  to improve access to best practice care

TSCNZ Newsletter Feb 2025 In this issue: Disability Support Services Consultation Rare Disease Day 28th Feb TSCNZ/Glow Up Show Up events in March Fundraising Donate Resources

Check your inboxes or click this link for all our latest news about get togethers for Rare Disorders Month on 8 March 2025, Bear's incredible TSC Heroes Fundraiser, our AGM, new community organiser, Rare Disorders Strategy Update and Petition and Research News.

Come and join us in person at Crave Cafe in Auckland or online at the TSCNZ AGM at 2pm on Saturday 10th August. Email info@tsc.org.nz to RSVP. Check out the July newsletter for other news about TSC Heroes, research and advocacy. https://mailchi.mp/8340b21011e6/tscnz-newsletter-july-2024

Go to our Newsletters and Resources page for our latest newsletter or click on this link. Find out about your chance to support TSCNZ and TSC awareness with our new merchandise and your invitation to our special TSC Chat online to mark Global Awareness Day on Wednesday 15th May at 7:30pm.

Click on this link for all the latest news - AGM Report, Website update, Membership request, Rare Disorders NZ Survey, TSC Chats, Research News and more.

Check out the July newsletter for details of our upcoming AGM on Zoom on the 7th August, Conference news and videos, Epilepsy NZ survey and much more. https://mailchi.mp/7da618cdf897/tscnz-newsletter-july-2023

Don't miss out! Registrations for the NZ TSC Conference this coming Saturday close on Wednesday 10th May. See you in Auckland! Follow this link for tickets and all the information: https://www.eventbrite.co.nz/e/tsc-national-conference-2023-tickets-488338382247

Our April newsletter is out now! Click on this link for all the information about our upcoming conference to mark Global Awareness Day, TSC Chat, Committee News, our updated brochure, TS Alliance's World Conference videos, Rare Disorders NZ and more.

Conference registrations and applications for travel & accommodation grants are now open. Click on the eventbrite link for all the details. See you in Auckland, May 2023! https://www.eventbrite.co.nz/e/tsc-national-conference-2023-tickets-488338382247

Our November newsletter is out now at this link! Lots of news and some important upcoming dates including our next national conference on Saturday 13 May 2023. We are also launching TSC Chat with our first one for parents of children and young people with TSC on Wednesday 30 November from 10am-11am. We hope you can join us for an informal chat with others who know how to pronounce Tuberous Sclerosis Complex! Whether your child is newly diagnosed, or you have been living with TSC for a while it can be really helpful to share questions and experiences. Email info@tsc.org.nz if you'd like to Zoom in and we'll send you the link.

The July E-News is out now with all the details of our AGM to be held on Sunday 7th August at the Auckland Botanic Gardens, a report on Global Awareness Day, information about virtual registration for TSC World Conference and more. Check it out at this link.

As the country and world open up again, we thought it would be a good time to take stock of where we are as an organisation. TSCNZ aims to inform, connect and support the NZ TSC community through support for individuals, lobbying and representation to medical professionals and government and keeping the community up to date with research and information. Your feedback is really important in helping us focus our efforts and further improve our services.  Please complete this survey to help us reflect and set priorities for the future. It will take just 10 mins of your time and all responses are confidential. PLEASE complete the survey during April or May to go in the draw to win a $100 Prezzy Card.

Lots of news in our latest newsletter which is out now including Te Aroha Music Festival, TSCNZ Survey, Committee News, Membership Restructure, International News, Dr Tonya Kara Memorial Award,Research, Resources, Advocacy, Brochure and more! Check it out at this link.

Almost 200 of these wonderful, informative resources for newly diagnosed individuals and families have been sent out to families, organisations and medical professionals with and interest in TSC. We hope they will provide a 'softer landing' for individuals and families as they find their feet and navigate the complex world of TSC. They can also be accessed as PDFs on the Resources page on our website. Thanks again to TS Australia and our generous sponsors for making this project a reality. We are extremely grateful to the family and friends of Jo Maling, Aft Pharmaceuticals, the Geary family. Leah Bos and all those who support TSCNZ financially.

Our April Newsletter is out. It covers a range of things including the Global Awareness day on May 15th and the Onlin e conference that same weekend.

Please see our latest MailChimp newsletter. It includes items on: Progress on Funding of Sirolimus, Research News, Global Awareness Day, Fair for Rare Campaign, New Brochure, Mail Chimp Newsletter

Online Awareness Campaign We hope you have come through Level 4 as well as possible. Although we are still unable to meet in person, we hope you will join with the global TSC community to support our online awareness day campaign acknowledging that even though we are physically apart at the moment we are still united in spirit. To take part please ... [click here to read the full mail out] Other items in the mail out: It also has information on the World Forum discussing TSC in Covid-19 times Registration link: https://us02web.zoom.us/meeting/register/tZYldempqT8oGNdQtOvt4_TGbDPkU2bWdKGK There is also an invitation to send through any stories or thoughts related to COVID-19 and TSC in New Zealand that can be shared on a TS Alliance podcast. Link to the colouring page rainbow for TSC for printing out

We hope you are safe and well in your bubbles in these strange Covid-19 affected times. Looking at news from around the world, I am feeling grateful that New Zealand is working so hard to stop the spread of Covid-19 but also acknowledge that it is a very stressful time for many here also. Read more of our April newsletter here:

Thanks to TS Australia and their medical experts for this information: We know that like everyone, our TSC community is being flooded with many sources of information about coronavirus (also known as Covid-19). If you or a member of your family have TSC, you may have questions or feel anxious about how the virus may affect you. 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. However, if you have TSC and are in one or more of the following groups then your symptoms might be more severe if you do contract the virus: you are taking everolimus or sirolimus tablets or liquid you have lymphangioleiomyomatosis (LAM) or reduced lung function you have refractory epilepsy If you are taking everolimus or sirolimus tablets or liquid, we recommend you might want to speak with your doctor for advice on how to best manage your situation. Staying up to date with the latest information As you will already have seen, the information on Coronavirus is fast-changing. We recommend you get the latest information from the Ministry of Health and keep up to date with their advice. Their recommendations and advice cover people with immunosuppression and people with comorbid conditions. If you need to speak to someone about Coronavirus, please call Coronavirus Healthline on 0800 358 5453. It's free and available 24 hours a day, 7 days a week. Note: Healthline's main number for non-coronavirus health concerns is 0800 611 116. These contact numbers will connect you to professional health advice and information. Other useful resources include: New Zealand Ministry of Education World Health Organization NZ Government Website Covid-19: Information for Disabled People and Residential Care Providers We hope you and your family and friends all remain safe and well during this time.

Kia ora members and supporters, We're pleased to share with you the first TSCNZ newsletter of the year. You can find it on our Resources page along with all our old newsletters. There are some great updates in here, including: Positive news from Pharmac's review of the use of mTOR inhibitors for the treatment of complications associated with TSC. Details on the upcoming conference in Sydney. Check out how we may be able to help get you to Australia this May to hear about the latest research and treatments. Y our invitation to Rare Disorders NZ's Fair for Rare campaign launch in Wellington on February 28. Happy reading. Frances Morton Secretary Tuberous Sclerosis Complex New Zealand

The Nov 2019 newsletter is now up on the site - sorry for the delay. You can find it on our Resources page along with all our old newsletters. That page has some great resources for our community too. For example if you've never looked at the TAND checklist - we recommend it.

All are welcome to attend the TSCNZ AGM on Saturday 15 June @ 4pm at the Owen G Glenn building in Auckland followed by a casual dinner at a nearby Italian restaurant Da Vinci's. If you are unable to make it to Auckland, there will also be a conference call link available. There is no expectation to join the committee if you come to the AGM but of course new committee members are always welcome. Consider shoulder tapping grandparents, aunts, uncles... :-) Please RSVP for the AGM or the dinner by email to info@tsc.org.nz.

The May newsletter is now up on the site. You can find it on our Resources page along with all our old newsletters. That page has some great resources for our community too. For example if you've never looked at the TAND checklist - we recommend it.

We are promoting two TSC Global awareness day events here in NZ: For those who want to compete or support someone in The Nugget - Dig Deep for TSCNZ For those who like Tattoos, Tea and Scones ... #Tatts4TSC

We're delighted to be able to share the links to the videos from many of the excellent presentations at the TSC National Conference 2018. Thanks to Nicky & Brian Geary and the Silver Lining Charitable Trust for their sponsorship of this initiative. It will be so valuable for those in the community who were unable to make the conference to view them and also for all of us to share with our medical professionals and connections. https://www.youtube.com/playlist?list=PLEij1yWI9viqXSjq8b3ZTuRhFExg50Fud

An opportunity for individuals, families and professionals in the Tuberous Sclerosis Complex community to learn more about TSC from a range of speakers including Professor Petrus de Vries from South Africa, world expert on Tuberous Sclerosis Associated Neuro-Psychiatric Disorders. BUY YOUR TICKETS HERE Feedback from our last national conference in 2014: "To be a well informed, connected and supported TSC parent is the best gift we can give to our TSC affected children." "Helps you understand the great unknown of TSC." "The conference made me feel not so alone." DATE AND TIME Sat 29 September 2018 9:00 AM – 4:30 PM NZST Add to Calendar LOCATION Willis Room, Life Centre 21 Hania Street Wellington, Wellington 6011 View Map REFUND POLICY Refunds up to 7 days before event

We are deeply saddened to hear that passed away on Monday. Tonya was one of our TSC Champions – she supported us, guided us, gave us hope and supplied us with endless knowledge, compassion, enthusiasm and love. She was passionate about supporting her colleagues in nephrology and paediatrics to provide the very best of care for their patients with TSC. No words can ever fully describe what she has done for the TSC community. She will be greatly missed and our hearts go out to her family and friends.

May 15th is the 2018 In the run-up to this event, starting tomorrow, we will be posting 15 TSC facts each day. There are also three special frames that you can add to your Facebook profile...go to https://www.facebook.com/profilepicframes and search for TSC Global Awareness Day TSC Global Awareness Day is sponsored internationally by Tuberous Sclerosis Complex International (TSCi), a worldwide consortium of TSC organizations of which TSCNZ is a member. For more information please visit: https://www.facebook.com/TSCglobalday/ http://www.tscinternational.org/ http://www.iamtsc.org/

Often one of the first seizure types in babies with TSC, check out this clear, accurate video to mark infantile spasms week. These seizures can look so subtle yet cause so much damage. Awareness is key to diagnosis and treatment.

When Cynara Stalenhoef’s husband was diagnosed with a rare genetic condition that affected his kidney’s she immediately offered to donate one of her own because they are the same blood type. Unfortunately she was told she was too overweight and not healthy enough to do so. In a bid to save her husband’s life, mum of two Cynara set off on a weight loss journey and has since shed over 50kg!

Share this video with your friends, Twitter followers, etc. We want to reach as many people as we can. TSC is a rare genetic disease affecting 1 million people worldwide. It causes tumors to form in vital organs, like the brain, kidneys, heart, lungs, eyes and skin. TSC is also the leading genetic cause of both epilepsy and autism.