News « Charlie Teo Foundation

4 October 2023

Charlie Teo Foundation (CTF) has been made aware of an online advertising scam that is illegally using our founder’s image and/or endorsement to promote blood pressure medication. 

These fake ads appear on social media and website advertising. Neither Dr Charlie Teo nor CTF are responsible for these fake online public advertisements, and we do not endorse or support them.

Many supporters have sent us copies of these online ads asking if they’re scams. If you receive or see one of these fake ads, we urge you to report it. Please do not click on any ad links or provide your personal details.  

The Australian Government provides information on how to report scams: 

19 September 2023

Today we pay special tribute to our little friend Alegra. Today would have been Alegra’s 12th birthday. A beautiful angel, taken too soon, age six.

The Alegra’s Army Grant was established by the Little Legs Foundation in partnership with the Charlie Teo Foundation to ensure that no family and child has to suffer the ultimate price like Alegra.

We are proud today to honour Alegra by sharing recent DIPG research progress across the world.

Our little angel, Alegra

Lethal, inoperable, and seemingly incurable – these are the sombre labels that have long characterised Diffuse Midline Gliomas (DMG), previously known as Diffuse Intrinsic Pontine Gliomas (DIPG).

DMG is a fatal type of cancer that predominantly affects children’s brain and spinal cords.

Unlike many other solid paediatric cancers, DMG doesn’t grow as large masses; instead, these cancer cells blend into healthy tissue, making them highly evasive and difficult to treat. The current treatment approach is palliative radiotherapy, bringing only short-lived relief, with patients often surviving just 9 to 11 months after diagnosis.

Here is where HOPE enters the picture…. 

Published findings from a team at Michigan University and international collaborators including Charlie Teo Foundation-funded superstar Professor Matt Dun, have shown for the first time in clinical trials that a new compound called ONC201 nearly doubled survival for patients with DMG compared to previous patients. This breakthrough cracks the seemingly unbreakable armour of DMG.

This breakthrough brightens the path ahead, reminding us that even in the face of the toughest challenges, science's light can guide us toward solutions we once thought were beyond our grasp.

Prof Dun’s team didn’t stop there… They also figured out how DMG becomes resistant to ONC201 and found a way to tackle it. By combining ONC201 with another drug, ‘paxalisib,’ and standard radiotherapy, they’re aiming to boost the treatment’s effectiveness. These preclinical findings generated by Prof Matt Dun and his University of Newcastle research team supported the rationale for a DMG clinical trial known as PNOC022 that was recently brought to Australia, to test this combination therapy in DMG patients. Read more

Prof Dun with DIPG patient, Maddie

Through the Charlie Teo Foundation’s More Data grant scheme, Prof Matt Dun and his team have also uncovered that ONC201 can potentially empower the immune system to better recognise and attack DMG cells. Empowering and engineering the immune system to better recognise and attack cancer cells has been shown to be effective and even curative in some forms of leukemia. However, this strategy remains quite difficult to implement in solid tumours like DIPG for a plethora of reasons which have been recently summarized by Dun Lab superstar, PhD candidate Bryce Thomas (supported by an Alegra’s Army PhD Scholarship), in the prestigious journal Trends in Cancer.

Bryce Thomas. Photo credit: X (formerly Twitter) @Bryce_Thomas23

One of the main reasons DMG is so hard to tackle is because the tumour creates an environment around itself that shields it from the body’s immune system. This means that the immune system, which normally fights off infections and diseases, can’t effectively recognise and attack the cancer cells. This protective shield is made up of certain cells that are meant to help us, but in this case, they end up aiding the cancer’s growth.

Preliminary findings from Prof Matt Dun’s Alegra’s Army Grant funded in partnership with the Little Legs Foundation has shown that ONC201 can potentially weaken this protective shield, making the DMG cells more visible to the immune system and promoting an influx of battle-ready immune cells into the tumour. Further validation of this work is currently underway as the lab perfect the best DMG model to study the phenomenon in the lab. The Dun Lab suggests that a possible alternative treatment can include the use of ONC201 in combination with another type of immunotherapy called adoptive cell therapy or a chimeric antigen receptor (CAR) T cell therapy. This innovative approach involves modifying a patient’s own immune cells, teaching them to specifically target the DMG cancer cells.

Alegra's Family and founders of the Little Legs Foundation together with Prof Dun
Eve and Maddie, two little girls in Australia courageously fighting brain cancer. Both are defying statistics and we send our love each day. Photo credit: Instagram @LittleLegsFoundation

Preliminary evidence from a Stanford study has shown that this approach demonstrated enhanced tumour reduction and improved neurological conditions in three of four patients.

However, an ongoing challenge associated with this strategy involves teaching the cells what DMG cells look like because not every DMG cell looks alike. From this project, Prof Matt Dun’s team have identified a potential marker that can better identify and differentiate DMG cells from healthy cells. The group are currently working on a strategy to exploit the finding in the clinical setting.

In the end, this isn’t just about science—it’s about HOPE. Prof Dun and his team are at the forefront, driving progress and uniting the masses. Their ONC201 breakthrough brightens the path ahead, reminding us that even in the face of the toughest challenges, science’s light can guide us toward solutions we once thought were beyond our grasp.

This Childhood Cancer Awareness Month we’re shining a light on the need for better treatments.

Matt with his family. Matt lost his beautiful daughter Josephine to DIPG. Photo Credit X (formerly Twitter) @MattDun17

Brain cancer research is significantly underfunded compared to other cancers, meaning survival rates have barely improved in about 40 years. Research funders like the Charlie Teo Foundation are crucial to changing the future for brain cancer patients and families.

To date Charlie Teo Foundation has committed more than $10 million to brain cancer research in Australia and globally. This includes $2.7 million awarded into DIPG/DMG specific research. Compare this to the Australian Government that has awarded $970,000 to DIPG/DMG specific research over that same period.

United together we can shine a bright light on the need for more funding for brain cancer research and better treatments in Australia.

Extraordinary scientists need our support to do what they do best in their quest for a cure!

Prof Matt Dun and his research team taking a well earned break from their hard work and dedication to funding better treatments for DIPG/DMG. Photo credit: X (formerly Twitter) @MattDun17

1 September 2023 – Today marks the first day of Childhood Cancer Awareness Month. The sad truth is that brain cancer is the deadliest of all childhood cancers.

Charlie Teo Foundation is on a global mission to change this by funding the BRIGHTEST brain cancer researchers worldwide!

One of these remarkable researchers who we have funded locally to develop world-first tools in brain cancer is one of ‘Australia’s Superstars of STEM’ Dr Jessica Buck. Dr Buck is also a new mother, proud Kamilaroi woman and the first Aboriginal woman to graduate with a PhD from Oxford University.

Dr Buck shares more about her research into childhood brain cancer one year into her Better Tools Grant from the Charlie Teo Foundation…

Survival rates for kids with brain cancer have barely changed in 30 years. The treatments we use haven’t changed either…

To date very few new brain cancer drugs have been identified for children. We believe this is partially because children are treated as ‘small adults’ in cancer drug discovery. Virtually all pre-clinical studies are conducted in adult models rather than paediatric models.

This completely ignores massive differences that exist between adults and children in the developmental stage of their brain, immune system, organs, and tumour microenvironment.

Under my Charlie Teo Foundation Grant, I have been working to develop world-first techniques to more accurately evaluate new childhood brain cancer therapies. Our pipeline aims to enable the testing of new immunotherapies in paediatric models for the first time.

We desperately need more research into this devastating disease to develop better treatments. This is why charities like the Charlie Teo Foundation are SO important. Better research can provide HOPE to kids with brain cancer and their families.

My ultimate goal is for all kids with brain cancer to grow up to live long, happy and healthy lives.” – Dr Jessica Buck, Perth 

Help support extraordinary scientists in their quest to cure brain cancer by joining one of our upcoming events!

20 May 2023 – A research update and thank you message from Professor Matt Dun and the University of Newcastle. Hear from a DIPG family about how this research aims to extend the lives of Australian children.

"We extend our thanks to the Charlie Teo Foundation and your donors for supporting our research through grant funding and access to tumour samples from the Charlie Teo Foundation Brain Tumour Bank.

We are immensely grateful to you for supporting the research required to change outcomes for DIPG/DMG patients and their families. This important research would not occur in your absence.

Thank you for your ongoing willingness to see our work succeed." 

– Professor Matt Dun, University of Newcastle, Australia

Here is the team’s latest research paper, published in the journal Cancer Research.

Reporting the mechanisms behind response to ‘ONC201’, and its effect in combination with ‘paxalisib’, the paper details the team’s dedicated efforts to bring promising therapies to clinical trial.

Proudly, they were able to make this possible within just three years, their research underpinning PNOC022 (Combination Therapy for the Treatment of Diffuse Midline Glioma – NCT05009992), opening in the US in 2021, Australia in 2022, and now recruiting in New Zealand, Switzerland, The Netherlands and Israel.

Prof Dun and the University of Newcastle team are currently studying how they may further improve response to ONC201 and paxalisib, as well as the immune and multi-omic studies directly supported by Charlie Teo Foundation. 

Impact of this Research on Families

Alan Suy, DIPG Father

“My daughter Maddie has reached a 30 month milestone this May. It has been 30 months since she was diagnosed with a terminal brain tumour called DIPG.

This rare type of malignant brain cancer statistically affects around 20 children in Australia each year, and the average survival time is between 9-12 months.

"Maddie is still alive due to the love and drive of her family, all DIPG families, her neurosurgeon, incredible local scientists and the work of the Charlie Teo Foundation and its wonderful and dedicated team." - Alan Suy

Maddie is beating the odds. We’ll never know for sure why this is… But what I do know is this…

✨We made the decision for Maddie to be operated on by Dr Charlie Teo to remove the focal part of her tumour.

✨We donated Maddie’s tumour to the Charlie Teo Foundation Brain Tumour Bank for research.

✨Research conducted by Prof Matt Dun’s team here in NSW and funded by the Charlie Teo Foundation and other philanthropic organisations was recently published in the Cancer Research journal. This research and the data that came out of it was instrumental in bringing a promising new therapy for kids with DIPG to clinical trial in just three years. 

✨Maddie was one of the first Australian children to be enrolled in this clinical trial in Sydney. This trial has now launched in 20+ hospitals around the world. 

✨Maddie is still alive due to the love and drive of her family, all DIPG families, her neurosurgeon, incredible local scientists and the work of this foundation and its dedicated team. It takes a tribe of kind-hearted and talented people working together for our Maddie and other kids just like her.

This is not a celebration, it’s just an acknowledgement. While we are grateful to have her in a good state both mentally and physically (no disabilities) and living a quality life like any normal child, we still wake up in the middle of the night fearing the worst could happen at any time. It’s an empty and helpless feeling our DIPG parents often share.

914 days since diagnosis, 1 brain surgery & biopsy, 16 blood tests, 12 MRIs, 40 Radiation Therapy sessions, 1 CT scan, 3 ECGs, 2 ultrasounds, 2 General Anaethetics, 1 lumbar puncture, 10+ cannulas, 60+ appointments, 25 absent days from school, 440+ pills, daily doses of Chinese herbal medicine, vitamins and supplements, countless covid swabs, countless mouth ulcers, bad skin rashes, fevers, and side effects. 

This list may sound exhaustive, but you would do anything for your child to live a happy life, hoping that they will grow up, finish school, work in their dream job, find a partner, get married, start a family… 

Her recent MRI scan returned another positive result – the tumour appears stable! Our daughter is a warrior. She keeps on fighting! She loves going to school, painting and being a big sister to baby Emily born just three months ago. 

We have to stay positive and hope that one day we will find a cure. We just hope that the cure comes in time to save her and stop the suffering of every other child with this terrible disease.” 

– Alan Suy, Maddie’s father 

17 May 2023 – Research Update

Close to 450 biospecimens spanning 15 years of brain tumour patients are being shared by Charlie Teo Foundation’s Brain Tumour Biobank with Australian brain cancer researchers

Dr Ashraf Zaman, Biobank Co-Ordinator

What is Charlie Teo Foundation's Brain Tumour Biobank (BTB)?

The BTB is a biobank. Biobanks typically collect, store and disseminate to researchers biospecimens such as tumour tissue, blood and associated de-identified clinical data from consenting patients. Specimens are collected from patients during surgery. Researchers with ethically approved projects can apply to access samples and associated de-identified data for research.

The scientific aim of the BTB is to produce and share high-quality, well-annotated, biological and clinical data that has the potential to drive further innovation and scientific breakthroughs.

“Charlie Teo Foundation's Brain Tumour Biobank is sharing crucial high-grade brain tumour material, enabling scientists to understand how these deadly tumours are programmed so we can finally develop new treatments.” – Professor Jeff Holst, University of New South Wales – Sydney

Why is this an important resource to treat brain cancer?

Biospecimens in the BTB have been collected from brain tumour patients over the last 15 years. This makes it an incredibly important and unique resource for brain cancer research and tracking tumour progression.  

Brain tumours range from benign (least aggressive) to cancer (most aggressive), with the most aggressive type, GBM, being notoriously difficult to treat. Over the past three decades, despite advancements in detection and treatment methods, the mortality rate associated with these types of brain cancers has shown no significant change.

The most aggressive form of brain cancer is currently treated using a multipronged approach that can involve surgery, radiotherapy and chemotherapy. Yet the long-term outlook and survival rates of people with such cancers remains very poor (median survival of 14.6 months and a five-year survival rate of only 6.8%).

Current efforts in brain cancer research are to tailor treatments to the individual’s brain cancer however this can only be successful if there are reliable ways of identifying what is different about an individual’s brain cancer and adapting treatment to that difference.

To identify ways to personalise treatment and ensure patients receive therapies that will benefit them the most and make a significant difference to their chances of beating brain cancer, procurement of high-quality samples is vital.

Brain cancer research with real-world (translational) impacts relies on the use of high-quality samples. These translational impacts include the 1) identification of risk, 2) early detection, 3) sub-classification (including prognostics and predictive biomarkers), and 4) identification of new drug targets and treatments across a broad range of research fields, including molecular and cell biology, cancer genetics, clinical research and biomarker research.

The BTB has collected, processed, stored, retrieved and disseminated high-quality samples and information for research projects following informed consent from participants diagnosed with brain tumours.

Together, the collection and processing of these samples, with the data made available for use to the research community, not only increases the utility of these samples but also increases research information that can be obtained, increases the rate of research and accelerates research findings to benefit brain cancer patients.

“Brain cancer banks with paediatric biospecimens and high-quality data provide an invaluable resource to help researchers identify novel therapies for childhood brain cancer.”
– Associate Professor Raelene Endersby, Telethon Kids Institute - Perth

How are BTB operations supported?

Biobank operations are funded by the Charlie Teo Foundation. In other words, the Charlie Teo Foundation is the research sponsor. This includes operating costs such as infrastructure, consumables, information technology, maintenance etc.

Do researchers pay to access biospecimens from the BTB?

No. Biospecimens in the BTB are made available to researchers free of charge. Use of samples must be for scientifically valid and ethically approved brain cancer research projects.

The only potential costs associated with access to biospecimens may be if courier transport is required. In most cases, the option for physical collection in person is available.

BTB was established under the Charlie Teo Foundation’s research theme of More Data – to produce and share high-quality, well-annotated, biological and clinical data that has the potential to drive further innovation and scientific breakthroughs. The concept of ‘Open Access’ underpins the biobanking model, where there are no financial barriers to accessing materials.

Charlie Teo Foundation’s More Data theme centres around encouraging the breaking down of research silos, and the sharing of ideas, data and information. Research findings and data where possible should be made openly available for others in the field to learn from and build upon. We believe this will increase the odds of finding a cure for brain cancer.

How is the BTB monitored?

The BTB is scientifically and ethically approved by independent, human research ethics committee (HREC), Bellberry Limited, in accordance with the guidelines of the National Health and Medical Research Council of Australia’s National Statement on Ethical Conduct in Human Research (National Guidelines). Research progress is reported and ethically approved annually. A routine site monitoring audit was recently completed under the National Guidelines.

BTB is also a NSW Health Pathology certified biobank, meaning its processes and procedures are certified in line with international best practices including ISO 20387 – Biotechnology – Biobanking – General Requirement for biobanking.

BTB is not currently recruiting new participants or collecting new specimens, with the governance protocol amended and ethically approved to reflect this. The BTB continues to process, store, retrieve and disseminate high-quality samples and information for research projects.

Biobanking processes

The BTB is open and transparent about biobank processes including consenting and material handling procedures, quality assurance measures and processes for accessing materials. See below for a summary of the research projects where biospecimens have been approved or accessed to date from the BTB. For more information refer to the publication in the Open Journal of BioResources.

Citation: Caixeiro, N.J., Po, J.W., Zaman, A., Sughrue, M.E. and Teo, C., 2021. Charlie Teo Foundation Brain Tumour Bank. Open Journal of Bioresources, 8, p.3. 

Brain Cancer Research Projects Supported by the BTB

Understanding the relationship of cytomegalovirus (CMV) infection to immune surveillance within the GBM tumour microenvironment

Key Aim: To assess the prevalence of CMV within a wide Australian GBM patient population and to identify GBM patients with a favourable immune phenotype towards targeting CMV as an immune therapeutic strategy.

Brain cancer samples: 34 GBM and 1 diffuse astrocytoma brain tumour sample.

Developing a metabolic roadmap to discover novel therapeutic avenues to starve GBM

Key Aim: To undertake metabolic profiling of GBM patient samples, to understand how they use and distribute their essential nutrients. This will develop a metabolic roadmap which can be combined with genetic and transcriptomic information being developed through the Garvan Institute of Medical Research. Ultimately, success in this project will enable us to understand how GBM tumours are metabolically programmed, providing critical data for future studies developing new therapies targeting these metabolic vulnerabilities.

Brain cancer samples: 13 GBM brain tumour samples.

Multi-modal identification of actionable targets against diffuse midline glioma (DMG) – making a pipedream a reality

Key Aim: To create a multimodal pipeline capable of identifying actionable drug targets or treatment strategies to treat diffuse midline glioma. Tumour tissue, tumour cells and plasma will be subjected to TSO500 NGS sequencing, with tissue and cells subjected to proteomic and phosphoproteomic profiling, and drug screening in near real-time.

The project has a particular focus on the protein features of poorly survived brain cancers. Anti-cancer therapies can be designed (or repurposed) to target these features as a strategy to reduce or halt tumour growth, aiming to prolong survival.

Brain tumour samples: 17 childhood brain tumour samples.

Identifying therapeutic targets from cell state models in adult-type diffuse gliomas

Key Aim: To identify how the specific genomics drivers of underlying adult diffuse gliomas cell states can be targeted with new therapies.

This project builds on the Brain Cancer Seq. initial project. The team continues the development of the computational methods required to not only identify cell states but the specific genomic drivers that underpin the development, progression and treatment resistance of various subtypes of adult diffuse gliomas i.e., astrocytoma, oligodendroglioma and glioblastoma. A particular focus is to unravel the genomic landscape changes during the disease progression i.e., the progression from i) lower grade to higher grade gliomas and ii) primary GBMs to recurrent GBMs.

To enhance their study, the researchers obtained additional samples to create and analyse 2D and 3D models. These models will serve two purposes: firstly, to validate the functional aspects of the genetic targets identified in the cell state study, and secondly, to conduct high throughput drug screening.

Brain tumour samples: Up to 170 adult brain tumour samples predominantly diffuse gliomas. Find out more

Deconvoluting the bulk proteomics signal according to the cell types in High-Grade Gliomas

Key Aim: To explore the proteomic signature in different types of brain tumours and to correlate this with sc-RNA-seq classification to better understand the heterogeneity of the tumours and deconvolute the bulk proteomics signal according to the cell types.

Brain tumour samples: Up to 110 brain tumour samples.