14 December 2023 – Read Now
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: https://www.cyber.gov.au/learn-basics/explore-basics/recognise-and-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.
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.
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
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.
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.
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.
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.
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.
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
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.
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.
“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 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
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Last updated December 2019
This Privacy Policy sets out our commitment to protecting the privacy of your personal information in accordance with the Privacy Act 1988 (Cth) and the Australian Privacy Principles. Charlie Teo Foundation ABN 57 622 041 061 only collects personal information that is reasonably necessary for us to perform our charitable activities.
What is personal information?
Personal information is information or an opinion about an identified individual, or an individual that is reasonably identifiable. Personal information can include a person’s name, address, contact details, date of birth, gender, sexuality and race.
What personal information does Charlie Teo Foundation collect and why?
To enable us to undertake our charitable activities we may collect the following personal information from you:
• Your name, title, signature, address, phone number, email, date of birth and employment details;
• Health information;
• Payment and billing details including bank and credit card details.
If you are making a donation, we may also ask you to provide details about the motivation for the gift and whether it is made on behalf of an individual or an organisation.
Who do we collect personal information from?
Charlie Teo Foundation may collect personal information from donors, volunteers, fundraisers, people with or affected by brain cancer, event guests, corporate partners and sponsors,researchers and research institutions, grantees, suppliers, service providers and other supporters.
How do we collect your personal information?
We may collect personal informationfrom you in various ways, including in-person, by telephone, via our website or email, the internet, through social media or by mail.
Third parties might also collect personal information from you (for example, organisers of fundraisers) to provide to us.
What do we do with your personal information?
Charlie Teo Foundation uses personal information in the following ways:
• To communicate with you about our activities including but not limited to upcoming fundraising events, campaigns, research activities and outcomes;
• To process your donation or application to organise a fundraiser;
• To enable us to undertake our volunteer program;
• For marketing and promotion of our activities including to help raise awareness and funds for brain cancer research;
• To enable us to conduct our grant program and research activities; and
• To comply with legislative or regulatory requirements.
We would only provide your personal information to a third party if it is necessary to perform our activities (i.e.if you have specific dietary requirements, we would provide that information to the organiser of the event).
Health information and other sensitive information
If you provide us with details of how you have been affected by brain cancer, including information about your medical condition, history andtreatment, this is considered health information. We will always seek your consent to the use and disclosure of such information, including using your story and image in our communications, social media and promotional material.
Research participants
If you participate in research programs that we conduct, we may collect personal information to record your involvement and to process the results of research and to contact you regarding participation in the study or future studies. The information we collect from you will generally be sensitive information because it will be your health information and could be other sensitive information such as information about your racial or ethnic origin. It will be handled in accordance with this privacy policy and any relevant research ethics approved by an external committee.
We may collect your personal information including:
• your medical history including, where relevant, a family medical history;
• your Medicare number and information about your privacy health insurance;
• current medications or treatments used by you;
• the name of any care provider, health service provider or medical specialist to whom we refer you back to or has referred you to us, copies of any referrals and reports;
• test results and samples.
Information may also be collected about individuals who are not research participants when we make a record about a research participant. For example, when collecting emergency contact details or a family medical history.
From time to time we may collate and analyse statistical data from information we have previously collected. In these cases, the data will be de-identified and aggregated before it is disclosed to third parties.
Biobank
As a brain cancer research organisation, we operate a biobank which stores biological samples and associated health data for use in research. Third party research organisations may provide us with samples and data from participants in their research studies, for inclusion in a biobank. We may use these samples and data to generate genetic or genomic information. Biobanks are a valuable resource to support research to develop new treatments, drugs and therapies and to understand health and disease conditions more broadly. We work with reputable contractors and third party service providers to operate our biobanks. Our biobank is designed and managed to protect the privacy of individuals and to comply with the highest standard of legal requirements and clinical ethics. In most cases, the biological samples and associated data are de-identified and it is not possible to identify individuals to whom the sample and associated data relates. Where this is the case, the samples and data will not be personal information which is subject to privacy laws. Where we do hold personal information in the biobank, it will be handled in accordance with this privacy policy and the relevant human research ethics approved by an external Human Research Ethics Committee. Research participants enrolled in this research will be given further information detailing how their personal information (including health information) will be handled.
How do we store your personal information?
Your personal information is stored onelectronic cloud-based databases and Microsoft Office 365. We also may hold hard copy information on-site at our office. We have implemented electronic and physical measures to protect the personal, sensitive and health information we receive from misuse, interference and loss, and from unauthorised use, modification or disclosure. We are not, however, liable for any unauthorised access or disclosure of information.
Your financial information
Our website uses Secure Sockets Layer (SSL) certificates to protect your credit card information over the internet. We also encrypt the credit card details we store on our electronic cloud-based database.
Access to and correction of your personal information
At your request, Charlie Teo Foundation will provide you with access to your personal information that is held by us. We may, however, refuse a request for access in certain circumstances in accordance with Australian Privacy Principle 12.
If you consider the personal information that we hold about you is inaccurate, incomplete, irrelevant or out-of-date, please contact us so that we can correct the information.
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How are changes to this privacy policy made?
We may, at any time and at our discretion, change this Privacy Policy by publishing the amended Privacy Policy on our website. We recommend you check our website regularly to ensure you are aware of our current Privacy Policy.
For any questions or notices, please contact our Privacy Officer at:
Charlie Teo Foundation ABN 57 622 041 061
Phone: (02) 8880 8328
Email: info@charlieteofoundation.org.au
We will respond to requests within a reasonable timeframe.
Last updated December 2019