TSA was established by volunteers from the TSC community and those with a personal connection to TSC remain closely involved with TSA. We acknowledge and thank our previous leaders including Lynn Wilson and Sue Pinkerton.

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

Sydney-based members of the TSA committee 2019/20. From left: Patrick Norris, Michael Jones, Rob Haggett, Michelle Purkiss, Debbie Crosby
Debbie Crosby, President

Debbie and her husband Anthony have 2 beautiful daughters, Alana who is 14 years old and has tuberous sclerosis and Sophie who is 11. 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.

Michelle Purkiss, Vice President

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 former 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.

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, Committee Member

Alison joined the TSA Committee in November 2015 and served as Secretary from 2015 to 2019. 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.

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.

Miriam Chalk, Committee Member

Miriam joined the TSA Committee in 2019. Miriam has three children, Jemima, Caleb and Finlay.  Caleb was diagnosed with TSC in 2018 when he was eight years old.  Miriam says: “you just never know what is ahead but with love, support, courage and a brave little child anything is possible!”  Miriam and her family live in Blackmans Bay, Tasmania.

You can read Caleb’s story here.

Rob Haggett, Committee Member

Rob has over 10 years of experience working in human services, health and well-being, and is passionate about contributing to meaningful social impact. He has worked across extensively in not-for-profit sector in Australia as well as internationally in the UK, China, Philippines, Indonesia, Cambodia, Nepal and Fiji.  Rob holds an MBA from Sydney University Business School and is excited to be able to contribute to TSA’s mission.

Regional Contacts
Our volunteer 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 or complete the ‘Connect with your local regional contact form at the end of the list.

ACT

Dawn Bowra

Dawn has been involved with TSA for over a decade. Her daughter Emily was diagnosed with TSC at 7 months old. Dawn found connecting with and hearing other TSC family’s experiences in those early days, and for the years that followed, helped understand what to expect and how to lose their fear and find their fight. Dawn welcomes families in the ACT to contact her for local help and support.

 

Queensland

Fiona Crocker

Fiona lives on Queenslands’ Sunshine Coast and has been a regional contact for a number of years. Fiona is a mother of three with their youngest child Koby (6) having TSC. Koby has recently started prep (kindergarten) and Fiona secured an NDIS package and is happy to talk about navigating those waters.

 

 

 

Christy Herbert

Christy has been a regional contact on the Sunshine Coast of Queensland for several years. Her youngest son Lachlan who is 8 years old has TSC. Christy is happy to talk to any local families and help share stories and connect about the ups and downs of life with TSC.

 

 

New South Wales

Debbie Crosby

Debbie lives in Sydney and her eldest child, Alana was diagnosed with TSC as a toddler. Alana is a teenager now who lives with a wide range of TSC symptoms including epilepsy and autism. Debbie has been involved with TSA by helping and supporting families with TSC for over 10 years and has a lot of knowledge about the disease and treatment options, and about local services too. Please reach out to Debbie if you would like to connect with another family with a lived experience in NSW.

 

Western Australia

Nicole Stone

Nicole lives in Perth and her younger son, Joshua was diagnosed with TSC when he was 7 weeks old.  Josh is 15 years old now and lives with a wide range of TSC symptoms including a SEGA .  Nicole has been involved with TSA as a Regional Contact for a number of years now and has experience with surgery to treat seizures and also has knowledge of local services, particularly those for children and adolescents.

Victoria

Narelle Kerr

Narelle has been a valuable volunteer with TSA for almost a decade and has a wealth of knowledge and experience with TSC. Her eldest daughter, Lily is 16 years old and was diagnosed with TSC at 13 months of age, after suffering a series of tonic-clonic epileptic seizures. Lily lives with epilepsy which is controlled at this stage following neurosurgery in 2005. Although Lily’s main challenges in life are the result of her developmental delay and Autism Spectrum Disorder (ASD) she loves people, music, swimming and life in general.

 

Alison McIvor

Alison joined the TSA Committee during 2015 and served as Secretary from 2015 to 2019. 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. Alison is based in Melbourne and has knowledge of TSC and LAM and welcomes you to connect with her.

Tasmania

Georgina Schilg

Georgie lives in Launceston with her 3 children, the eldest of whom is 12 and was diagnosed with TSC as a baby.  Over this time Georgie has also participated as a Committee member for TSA and joined our team of TSC Heroes.  She is happy to share knowledge and provide support and assistance to families affected by TSC in Tasmania.

 

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Staff

Jackie Gambrell, TSA’s General Manager has extensive leadership experience.  She has previously held senior positions at AMPCo, a subsidiary of the AMA, and publisher of The Medical Journal of Australia; Goodstart Early Learning, Australia’s largest not-for-profit provider of early childhood education and care and, more recently, was Director of Corporate Services at Black Dog Institute, Australia’s leading mental health medical research institute. Jackie is passionate about social justice and is committed to high quality service.

 

 

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.

 

 

 

Kim Kerin-Ayres, TSA’s part-time nurse, is a Senior Nurse Consultant with extensive experience having worked in a variety of roles within the healthcare system for 30 years. Her work experience includes both health settings and not-for-profit environments. Kim has unique experience working with a telephone-based helpline where she was responsible for responding
to inquiries from patients, health professionals and the general public for clinical and supportive care information.

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.

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 (TSA President) and Sue Pinkerton