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empower Ensuring our community are informed, connected & supported. WHAT IS Tuberous Sclerosis Complex? Tuberous Sclerosis Complex (TSC) affects hundreds of individuals in New Zealand and thousands more carers, families and friends who live with the impact of the disease. TSC tumours can grow in any organ of the body, commonly affecting the brain, skin, heart, lungs and kidneys. TSC can cause epilepsy, developmental delay and autism. There is no known cure for TSC, but with appropriate support most people with TSC can live fulfilling lives. Read more Our Mission To ensure the New Zealand Tuberous Sclerosis Complex community are informed, connected and supported. Read more latest news Christchurch Coffee Catch-up Oct 11 TSCNZ President Helen Willacy will be at Terra Viva Cafe, 242 Roydvale Avenue, Burnside, Christchurch from 10:30am on Saturday 11th... Sep 17, 2025 Congratulations Helen! TSCNZ President, Helen, was nominated for a Rare Disorders 25th Anniversary award. Awards were presented at a special ceremony at... Apr 25, 2025 Donate Online DONATE Call us for Questions +6421 154 7017 Volunteer Your Time We'd love to hear from you and suggest effective ways you can assist our organisation! info@tsc.org.nz Mailing list

UPCOMING Events TSCNZ family conference watch this space! The management committee are looking at planning our next national conference in Christchurch, we would really appreciate ideas about venues, speakers, funders and any other local knowledge. Please email info@tsc.org.nz if you have any suggestions. Coffee catch-up in Christchurch October 11 from 10.30am 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. TSCNZ Annual general meeting 2025 The Annual General Meeting of the Society was held on Monday 4th August 2025. 2025/2026 Office Holders: President - Helen Willacy, Secretary - Tom Maling, Treasurer - TBC We teamed up with Rare Disorders NZ for some joint picnics/get togethers. It was lovely to meet families affected by TSC and other rare disorders. In Auckland, TSCNZ Committee member and Secretary Tom was joined by Rare Disorders NZ Board Chair James. Helen and Leah were joined by families from the Waikato in Tirau. Earlier, Community Organiser Lisa attended the Rare Disorders NZ 25th Anniversary Awards Ceremony and was a judge at the Rare Beer Challenge. March 2025 TSCNZ & Rare Disorders NZ Glow Up Show Up events Visit our Facebook page to view what we have in store these upcoming months! Snaps of our TSCNZ family & previous events Donate Online DONATE Call us for Questions +6421 154 7017 Volunteer Your Time We'd love to hear from you and suggest effective ways you can assist our organisation! info@tsc.org.nz

about tscnz our History Tuberous Sclerosis Complex New Zealand (TSCNZ) was formed in 2014 by a group of dedicated volunteers with personal connections to TSC. Prior to 2014, we were part of the Australasian Tuberous Sclerosis Society (ATSS) which is now known as Tuberous Sclerosis Australia . When ATSS wanted to host a family conference in New Zealand, it became apparent that it was necessary to establish a New Zealand charity to ease the organisation of the conference and to further the goals of individuals and families living with TSC in New Zealand. TSCNZ was formed as an unincorporated society and was granted Charities Commission approval in June 2014. Follow this link to the rules of the organisation. TSCNZ was officially launched at the 2014 TSC Family Conference by the Honourable Peseta Sam Lotuliga, Associate Minister of Health. TSCNZ continues to work closely with Tuberous Sclerosis Australia and is a member organisation of Tuberous Sclerosis Complex International. TSCNZ is run by a management committee of volunteers and are well supported by other volunteers who provide support through the Discussions of Tuberous Sclerosis in Australia and New Zealand Facebook page , fund-raising, website management, graphic design (Kate Sutherland) and book-keeping. A number of clinicians act as medical advisors to TSCNZ. We are very grateful to our founding donors whose generosity has ensured TSCNZ has a secure financial base. Founding Donors Boakes Family | Comer/Lucinsky Family | DE and O Carter | Leah Bos | Leikis Family | Jairam Family R M Morton | Willacy Family Management Committee 2024/2025 Read our 2025 Annual report Helen Willacy (President) Tom Maling (Secretary) Julianne Managh (Treasurer) Leah Bos Frances Morton Lisa Underwood Find out more about members of the committee and how they became involved with TSCNZ on our TSC Stories page . The Management Committee welcome input from the TSC community. They can be reached at info@tsc.org.nz or 021 154 7017. The AGM is held in July or August each year. Community organiser 2025 Lisa Underwood (lisa@tsc.org.nz ) Policies Privacy Policy Working with Pharmaceuticals Companies Policy Other organisations we work with TSCNZ is a member of: We have close relationships with: We also work with : We have received donations or funding from : SUPPORT US TODAY Donate Online DONATE Call us for Questions +6421 154 7017 Volunteer Your Time We'd love to hear from you and suggest effective ways you can assist our organisation! info@tsc.org.nz

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