TSA Impact Report 2025

We are stronger together

A message from our CEO

It’s been another positive year for TSA despite challenging conditions with the cost of living crisis impacting most charities.

We are so grateful for all our supporters, particularly the Community members who share their stories, donate, volunteer, fundraise, raise awareness and give back.

It is only by working together that we can help create a better life and more hopeful future for everyone affected by TSC.

So, thank you, and we hope you enjoy reading about the things we have achieved together in 2025.

Jackie Gambrell

CEO

Our

Strategic

Goals

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

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

Our team

The work of TSA’s team is supported by of our volunteer Management Committee, many of whom have lived experience of TSC. Our new strategic 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 each year from our TSC Community Survey.

Thanks also to the following organisations that we work closely with: TSC International, TSC New Zealand, Genetic Alliance and Rare Voices Australia.

Achievements

- we couldn't do it without you!

TSA WEBSITE 28,270 website sessions and 68,000 website page views

FACEBOOK 2,100 followers of our page and 764 members supported through TSA’s private Facebook TSC Discussion Group

SUBSCRIBERS 1,218 monthly e-newsletter subscribers and over 600 subscribers to our Research Insights

HEALTH CARE 104 consultations with our TSA Nurse and 119 TSC experts in our Health Care Professionals Network

Our new resource for GPs and other clinicians explaining how to manage TSC over the lifespan was published and has received very positive feedback.

TSA advocated for and worked with Perth Children’s Hospital for the reinstatement of video EEG services in Western Australia.

TSA participated in Rare Voices Australia’s The Navigator Project, a government-funded project supporting people living with a rare disease navigate the health system.

We held successful Zoom Education Events for our TSC Community on Caregiver Gateway, TSC Skin Issues and mTOR Inhibitor treatments.

Your words

our mission

Thank you so much for all that you do in raising awareness for TSC and supporting families like ours. You are definitely making us feel less alone as we navigate the complexities of our TSC journey and we are eternally grateful.

Just attended the Zoom event on mTOR inhibitor treatments. What a brilliantly told story. Thank you! Dr Clara and Dr Denise were clear, concise, passionate, empathetic, positive. Really learnt a lot.

I have a grand daughter with TSC and I value what TSA does for all of us struggling with the reality of this condition.

When I first contacted TSA, I was instantly sent an information booklet - the Parachute Pack - with lots of information about the condition and I was offered support. I thought that was great!

This service is absolutely life changing for families facing TSC. Talking to the TSA nurse was the first time I have spoken to someone that not only knows what TSC is but has incredible knowledge and insight. I am so grateful for this service and relieved to get some information and advice on who I need to see to get answers. Thank you.

For a very small charity TSA does really well to continue to provide families with a new diagnosis the materials to find out more about TSC and all the latest research.

Fantastic website - provides great medical information and real life stories. We know we can rely on the quality and accuracy of the information on there. Thank you.

The nursing service is excellent and TSA also provides latest research and online education events. We'd be lost without them.

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 everyday courage, resilience, and kindness that brings us together. We’re reminded of the strength and hope we share as we look forward to a brighter future.

Light the Way

Our 2025 Light the Way Giving Day on TSC Global Awareness Day was an incredible show of support from our Community! Together, we raised over $54,000, with nearly 70% of those donations inspired by our passionate TSC family ambassadors and champions. Thanks to 319 generous supporters we’ve been able to increase the hours that the TSA Nurse is available to support members of our Community. Our supporters truly light the way for a brighter future for everyone living with TSC in Australia.

Katya Ginsberg, mum to Otis and Light the Way Fundraising Champion

We are so humbled by all the support we have received from TSA.Thank you so much for all that you do in raising awareness for TSC and supporting families like ours.

Shelley Stevenson, mum to Austin and Light the Way Fundraising Champion

My son was diagnosed with TSC when I was pregnant. He is 10 now. My employer, Kogan Creek Power Station, does monthly fundraisers and agreed to fundraise for Light the Way. I'm so grateful, they raised so much.

Mimi and Rob Rossano, parents to Roxie and Light the Way Fundraising Champions

We fundraise because there’s still more work to do. There is no TSC cure, there are gaps in treatment, medicines not covered by PBS, specific research trials into preventing TSC that are unfunded...

Kensington Kids Kingdom and Light the Way Fundraising Champion

We chose to support TSA's Light the Way Day as one of our lovely children is living with TSC.

Samantha Smith, mum to Isabel and Light the Way Fundraising Champion

Our family fundraise for TSA because they are a guiding light for families like ours when TSC comes crashing into their world. TSA works to inform, support, connect and empower the TSC Community.

Rachel Bennett, mum to Holly and Stella and Light the Way Fundraising Champion

I was really blown away when I took cupcakes into my girl's school on the afternoon of Light the Way day. When I got there, they told me all about how they’d been talking about TSC. Brought a little tear to my eye.

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

Balance Sheet as at 30 June 2025

Income & Expenditure: Year Ended 30 June 2025

Funding

Where TSA's funds came from in 2024/25

Total revenue: $199.193

How program funds were used in 2024/25

Thank you to AFT Pharmaceuticals - our new Corporate Partner

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 and look forward to 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 2025

Rare Voices Australia who have managed the Navigator Project.

Goldman Sachs Gives who have provided grant funding to support our TSA Telehealth Nurse Service.

Sanofi who generously provided financial support for the development of our resource for GPs and other clinicians to help them manage TSC across the lifespan.

Thank you to our amazing Community who make all of this possible

Please view our previous Impact Reports here.