Tuberous Sclerosis Australia was established as The Australasian Tuberous Sclerosis Society in 1981.
The organisation was established by Lynn Wilson, a mother of a child with Tuberous Sclerosis, who also had TSC herself. For 19 years it was lead by Sue Pinkerton, whose daughter Lizzie had TSC.
The group was originally formed to provide each other support as the families navigated their way through a myriad of TSC complications. To this day, our main focus still is to provide support for families with TSC. A large bulk of what we do is only achieved through the work of our volunteers.
In 2014 we changed our name to Tuberous Sclerosis Australia (TSA) as we celebrated the launch of Tuberous Sclerosis Complex New Zealand (TSCNZ). TSA and TSCNZ work closely together to provide information and support to families affected by TSC throughout Australia and New Zealand. TSA also liaises with international TSC groups in USA, Canada, England & Europe.
Debbie Crosby, President
Debbie and her husband Anthony have 2 beautiful daughters, Alana who is 13 years old and has tuberous sclerosis and Sophie who is 10. Alana was diagnosed at 7 months old and has autism, a developmental delay and epilepsy. Through TSA, Deb and Anthony have met many other families in the same situation as them and Deb decided to join the committee so she too could help other families. Debbie has a career in Community Services.
You can read Alana’s story here.
Patrick Norris, Treasurer
Patrick and Janet have 4 children and seven grandchildren (including Liam Walker who has TSC). He and Janet have been trustees of their Self Managed Super Fund for seventeen years. Patrick holds a Diploma in Superannuation Management. He is honoured to be the Treasurer of TSA and is in awe of the dedicated volunteers and professionals involved with TSA.
Patrick grew up in rural New Zealand after his family emigrated from England when he was 9. His career was in information technology and sales.
Alison McIvor – Secretary
Alison joined the TSA Committee in November 2015 as Secretary. She has a personal connection to Tuberous Sclerosis through her family. Alison’s background includes the financial services and not-for-profit sectors, where she has worked for many years in a range of marketing, business development, management and operations-focused roles.
Adish Chanda – Committee Member
Adish Chanda has a son who was diagnosed with TSC in 1990. Adish brings his experience in business and technology and as the father of a TSC child to his role as a committee member.
Hayley Hill – Committee Member
Hayley & her husband David have 2 gorgeous sons, Damien and Bradley. Hayley and her son Bradley both have Tuberous Sclerosis Complex. Hayley is very mildly affected and diagnosed at age 4 because of her facial growths (angiofibromas). Bradley was diagnosed at 3 months of age and has epilepsy, developmental delay, autistic tendencies and is non-verbal. Hayley joined the committee in 2008 and between 2009 and 2014 also held positions of Treasurer and Membership Secretary. Hayley also manages the TSA Facebook discussion group and contributes to community awareness and fundraising activities.
Michael Jones – Committee Member
Michael joins TSA with extensive business & not-for-profit experience. Michael does not have a personal connection with Tuberous Sclerosis Complex but was moved to make a difference for people living with the condition.
Michelle Purkiss – Committee Member
Michelle has always been happiest when she is working on things that make a difference. Through her consultancy career, she spent a lot of time working with pharmaceutical companies, hospitals and government organisations. After Clare (TSA’s General Manager) asked for her help with how to get a topical cream listed on the PBS, Michelle became interested in TSA’s work and how it was improving the quality of life for people with TSC.
Georgina Schilg – Committee Member
Georgina Schilg’s 6 year old daughter Sophie was diagnosed with Tuberous Sclerosis at the age of 9 months. Her involvement with TSA has grown over recent years after she and her husband attended the family conference in Sydney in 2011. Georgina’s involvement with TSA focuses on assisting with increasing community awareness on this condition, as well as providing support to others affected by TSC, particularly those in Tasmania.
You can read about Sophie here.
Jodie Conduit – Committee Member
After attending the 2015 TSA conference I wanted to involve myself in what the TSA stands for and is working towards. As a mother of a child, Logan 5, who has TSC and specifically the genetic mutation form where no one else in our family has ever had TSC. I really wanted to be involved for him and other children like him so that in the future they will have hope.
Our regional contacts work with local families to share information and experiences. To protect their privacy, we do not share their contact details here. Please contact us to get in touch with them.
Fiona Crocker (South)
Christy Herbert (South)
Fiona Hiatt (North)
New South Wales
Clare Stuart (nee Pinkerton) became TSA’s first employee in 2011. After volunteering for over 10 years, Clare is now the TSA General Manager and is working on expanding the support we provide to TSC affected families.
Clare’s sister Lizzie had Tuberous Sclerosis Complex. Clare has a Masters in Public Health from The University of Sydney as well as a professional background in IT and management consulting.
Our work is supported by our team of medical advisors. Other members of our TSC Professionals Network also contribute to various projects.
- Dr Sean Kennedy, nephrologist at Sydney Children’s Hospital
- Dr John Lawson, paediatric neurologist at Sydney Children’s Hospital
- Dr David Mowat, clinical geneticist at Sydney Children’s Hospital
Past Presidents of TSA: Lynn Wilson founded The Australasian Tuberous Sclerosis Society (ATSS) in 1981(top), Sue Pinkerton who ran ATSS for 19 years and Judy Nicholls (bottom).
It is thanks to the tireless work of these Past Presidents that TSA exists today.