A message from our CEO
Now in its 45th year, TSA continues to be available to inform, support and connect everyone in Australia living with TSC (Tuberous Sclerosis Complex). TSA has achieved so much in this time, and we acknowledge the significant improvements in health care that have been made.
Across Australia however, people living with TSC continue to experience inequitable access to care, delayed diagnosis, fragmented care and postcode-dependent services. These are challenges that require collaboration, advocacy and a shared commitment to creating lasting change.
We are so grateful for all our supporters, particularly the Community members who share their stories, donate, volunteer, fundraise, raise awareness and give back.
We are also appreciative of the many researchers and health care practitioners across the country who provide such excellent care to patients living with TSC each and every day.
It is only by continuing to all work together that we can help create a better life and more hopeful future for everyone in Australia affected by TSC.
Thank you. We hope you enjoy reading about the things we have achieved together in 2026.
Jackie Gambrell
CEO
Our team
The work of TSA’s team is supported by of our volunteer Management Committee, many of whom have lived experience of TSC. Ourstrategic plan for 2025-2028 was developed by the TSA Team and the Management Committee. A key consideration in setting our priorities is the feedback we receive from our TSC Community.
Thanks also to the following organisations that we work closely with: TSC International, TSC New Zealand, Genetic Alliance, Neurological Alliance of Australia and Rare Voices Australia.
Creating change
This is our therory of change which helps map out a clear path to creating positive change, providing a structured approach to address complex issues, test assumptions, and make data-driven decisions. When shared, it builds understanding and support by conveying TSA’s vision and strategic direction to the broader community.
ACTIVITIES
- Provide services to support and connect individuals living with TSC and their support networks;
- Monitor TSC research and disseminate information;
- Advocate for better policy support, health care delivery and increase funding;
- Foster connections with health care professionals
SHORT-MEDIUM TERM OUTCOMES
- Help the TSC Community to be better supported;
- Enable a thriving nursing service;
- Increase public awareness of TSC;
- Mobilise more engagement with Government and other funders
LONG TERM OUTCOMES
- A connected and informed TSC Community;
- Improved literacy among health care professionals;
- Earlier diagnosis of TSC;
- A sustainable TSA with resources to deliver on our mission;
- A growing awareness of TSC in the general population
IMPACT
- Everyone living with TSC is empowered to have a better quality of life
Your words
our mission
Our Community
Thank you to the amazing people in our TSC Community who have shared their personal stories with us. Each story shines a light on the joys and challenges that bring us together. We’re reminded of the resilience and hope we share as we look forward to a better life and a more hopeful future for everyone in Australia living with TSC.
Lilly
Otis
Zion
Bella
Holly and Stella
David and Alison
Light the Way 2026
Our 2026 Light the Way Giving Day on TSC Global Awareness Day was an incredible show of support from our Community! Together, we raised over $40,000. We were incredibly moved by the stories shared, the creativity of our fundraisers, and the generosity shown by supporters all around the country. From community bake sales and workplace fundraisers to heartfelt donations and social media shares. Our supporters truly light the way for a brighter future for everyone living with TSC in Australia.
Medical Advisory Panel
Our Medical Advisory Panel helps guide and support TSA (Tuberous Sclerosis Australia). We are indebted to this team of TSC (Tuberous Sclerosis Complex) experts which assists in reviewing and writing materials for our website and new publications, facilitates introductions to other health professionals and researchers and keeps us in the loop on important research, medical and treatment developments. You can learn more about the professionals who sit on that panel by clicking below.
Financial
Statements
Funding
Total revenue: $199.193
Thank you to AFT Pharmaceuticals
AFT Pharmaceuticals is a small pharma company headquartered in Auckland, New Zealand, that is busy working in a number of areas, including topical rapamycin cream for people living with TSC. We’d like to thank AFT for choosing to partner with TSA. We look forward to our continued partnership, working together to improve the lives of everyone living with TSC.
Thank you to the following grant givers who have kindly supported our work in 2026
Rare Voices Australia (RVA) who managed government funded grants for TSA’s participation in the Navigator Project and development of the Growing Up with Rare Diseases Disability: The Realities for Siblings and Practical Approaches for Families and Carers Program.
Jazz Pharmaceuticals who provided financial support for our TSA Telehealth Service.
CSL who selected TSA as a CSL Impact Award Winner enabling us to host more online education and information events for our TSC Community.
Sanofi who generously provided financial support for the development of our NDIS resources.
Thank you to our amazing Community who make all of this possible
Please view our previous Impact Reports here.
