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.

Management committee
The Tuberous Sclerosis Australia Committee is a dedicated set of volunteers. Most have a personal connection to TSC including having TSC themselves or a family member with TSC.

Debbie Crosby, President

Deb Crosby
Debbie

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

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

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Alison

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
Adish

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.

Michael Jones – Committee Member

Michael

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

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

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.

 

Volunteers and Regional Contacts
Our support volunteers and regional contacts provide peer support over the phone and in their local areas.

Regional Contacts

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.

ACT

Dawn Bowra

Queensland

Fiona Crocker (South)

Christy Herbert (South)

Fiona Hiatt (North)

New South Wales

Janiffer Reynolds

Debbie Crosby

Western Australia

Nicole Stone

Victoria

Narelle Kerr

Tasmania

Georgina Schilg

Staff

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 has a Masters in Public Health from The University of Sydney as well as a professional background in IT and management consulting.

Clare has two young children and lives in regional NSW. Clare’s sister Lizzie had Tuberous Sclerosis Complex.

 

 

 

Kate Garrard is a professional fundraiser working with our TSC community raising vital funds to help grow and support our work. After working in fundraising for Sydney Children’s Hospital Foundation for over a decade Kate brings a wealth of expertise to our organisation. Kate has a Bachelor of Business and prior to working in fundraising worked for many years in sales and marketing in 5 star hotels. She is the mother of two young children and is thrilled to work for an organisation that helps people live their best life.

 

Medical Advisors

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

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.

Debbie Crosby (Incoming ATSS President) and Sue Pinkerton
Debbie Crosby (Incoming ATSS President) and Sue Pinkerton