About Us


Tuberous Sclerosis Complex New Zealand was formed in 2014 by a group of dedicated volunteers with personal connections to TSC. Prior to 2014, New Zealand had been 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. Tuberous Sclerosis Complex New Zealand was formed structured 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 the Honourable Peseta Sam Lotu-liga, 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

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 each year.

Management Committee 2017/2018

Helen Willacy (President)
Janet Sharp (Secretary)
Julianne Managh (Treasurer)
Leah Bos
Amanda Sayer
Lisa Underwood
Frances Morton

More information about TSCNZ can be found in our 3-fold brochure.

We aim to help in the following ways:

  • Provide email and phone support for TSC affected families
  • Maintain an up-to-date website of TSC related information and resources
  • Participate in a network of TSC families across New Zealand and Australia, including a facebook group, Discussions of Tuberous Sclerosis in Australia and New Zealand
  • Publish an email newsletter and contribute to Reach Out-a regular journal published by Tuberous Sclerosis Australia
  • Hold conferences and seminars for families and healthcare professionals
  • Advocate to improve access to best practice care
  • Support TSC research activity in New Zealand