Charlie’s Letters « Charlie Teo Foundation

When the exception becomes the rule

May is Brain Cancer Awareness Month. To all our brain cancer community, this month we honour you. We are in awe of the courage, strength and tenacity displayed by so many of you when facing a diagnosis with brain cancer.

At the Charlie Teo Foundation we continue to work hard to offer you hope. You are at the centre of our quest to find and fund brain cancer researchers who think outside the box. We are looking for the answers that you need to live a long life and fulfil all your dreams and life’s ambitions.

In his latest letter, Charlie shows you what potentially game-changing research we have been working on to finally uncover the answers needed to better treat this devastating disease.

5th May 2021

Hello friends,

When you turn on the TV and the news, invariably you see a story about death and disaster, particularly at the moment. It would be easy to get a sense of hopelessness and futility. Yet everyday people approach life with a sense of perseverance.

As a neurosurgeon, I’ve been fortunate enough to learn from my patients what it means to demonstrate that kind of perseverance, even when the odds are against you. People diagnosed with brain cancer are forced to face an unimaginable fate. Their lives are measured in months and weeks, and their hopes and dreams may never be achieved. Sometimes they are told to go home and make arrangements for end of life.

When you are staring down the barrel at death, suddenly your grip on life becomes a whole lot tighter. It is at this time that people display incredible courage, driven by the hope that they may be the exception to the rule.

When you are staring down the barrel at death, suddenly your grip on life becomes a whole lot tighter. It is at this time that people display incredible courage, driven by the hope that they may be the exception to the rule.

Emma (pictured) is the exception to the rule. I was delighted to recently receive this beautiful message from Emma, enclosed with a Christmas card that I had sent to Emma and her parents in December 1991, 30 years ago.

“Charlie, when I was 4 years old you operated on me and I thank you for removing the brain tumour I had then. It recurred when I was 12 years old & was removed after 2 more operations. I’m now healthy and married with 3 healthy children. After 3 operations and a few permanent side effects, I am so grateful that I am alive and I’m able to celebrate 21 years Brain Cancer free with my family.”

“Charlie, when I was 4 years old you operated on me and I thank you for removing the brain tumour I had then. It recurred when I was 12 years old & was removed after 2 more operations. I’m now healthy and married with 3 healthy children. After 3 operations and a few permanent side effects, I am so grateful that I am alive and I’m able to celebrate 21 years Brain Cancer free with my family.”

Charlie Teo Foundation focuses on research as we want to make the exception become the new rule. We want to make high-grade brain cancers survivable, so never again does a patient have to hear, ‘we can’t cure you, we can only buy you time’.

So how do you make the un-survivable, survivable? There are plenty of real-life examples of scientific discoveries where things we never thought possible, are now possible. They did it by going against the grain, by pushing boundaries, by rebuffing groupthink. This is what we are trying to achieve, and COVID-19 has not halted our efforts.

Grant Announcements

We proactively seek out who we consider to be the best brains from around the globe to study brain cancer for the benefit of Australian patients. Let me introduce you to our newest researchers:

Prof Eran Elinav – Could gut health be the key to brain cancer?

We’re exploring uncharted territory

We now know there is a link between the gut microbiome, aka your ‘gut health’, and the brain. What has been recently discovered is that the gut microbiome could actually be the cause of some other neurological conditions and cancers. I’ve always wondered whether this link extends to brain cancer, and so we’ve sought out an expert to study this for the first time!

Prof Elinav is a gastroenterologist and guru in gut health at the Weizmann Institute of Science in Israel. He and his team were the first to show that the gut microbiome could not only trigger the neurogenerative disease, ALS, but also affect its severity. We have awarded $200,000 to find out if such a link exists to the cause, prevention, or even treatment of brain cancer. If a link is found, harnessing the microbes and their secreted products may lead to new biological therapies to prevent and treat brain cancers.

Prof Steve Kay – Blocking the biological clock of GBM stem cells

We’re going after the root of the problem

A Provost Professor of neurology, biomedical engineering and biological sciences at the Keck School of Medicine of University of Southern California in the U.S., Prof Kay is a pioneer in the study of circadian rhythms (body clocks) that regulate hundreds of activities, from sleep to digestion to body temperature. His team examined the biological clocks of glioblastoma (GBM) stem cells. These are the stubborn cancer cells which are currently impossible to eradicate even after surgery, chemo and radiation therapy. The team found the GBM stem cells are “on overdrive” making them stronger and more resistant to treatment and able to divide and multiply rapidly.

A small-molecule drug has already been developed by his team to target the proteins in the biological clock of the GBM stem cells to disrupt their activity and cause the cancer cells to die. We have awarded $273,000 to Prof Kay to further test and compare this new drug with the current standard of care. This is a really promising discovery and if successful, would become part of and improve standard of care for patients.

Program updates

Not only do we award research grants, but we run our own research program too.

Biobank

Charlie Teo Foundation Brain Tumour Bank (biobank) is the largest, certified, biobank of its kind in the southern hemisphere, collecting brain tumour samples from surgery and making them available for researchers to access and use in their research. By doing this, we’re making it possible for brain cancer to be studied faster giving hope to brain cancer patients.

Since it became operational, we have added brain cancers to the biobank to now house samples from over 600 patients. Below is a summary of the work of the biobank in the 2020 calendar year

Charlie Teo Foundation Brain Tumour Bank

2020 Impact

Brain cancer samples from 95 patients Collected by Charlie Teo Foundation

179 brain cancer samples Accessed by brain cancer researchers

4 brain cancer projects Supported by Charlie Teo Foundation

Charlie Teo Foundation Brain Tumour Bank

2020 Impact

Brain cancer samples from 95 patients

Collected by Charlie Teo

Foundation

179 brain cancer samples

Accessed by brain cancer

researchers

4 brain cancer projects

Supported by Charlie Teo

Foundation

Charlie Teo Foundation focuses on research as we want to make the exception become the new rule.

This Brain Cancer Awareness Month I want you to think of people with brain cancer. They are thrust totally out of their comfort zone, facing the biggest challenge of their life.

This May I am inviting you to join me in a personal challenge, and together we can tackle brain cancer head-on. I would like you to do something that displays a sense of spirit, focus or courage, just like I see in my patients. I have set myself the challenge to learn a new skill – something that inspires me creatively and is good for my brain health. I am learning to play the guitar!

Find out more about how to join me and take the challenge at the end of my letter. Together, with your support, we can see the exception become the rule.

Thank you from the bottom of my heart.

Charlie

Prof Charlie Teo AM
Founder

P.S. Read more about our game-changing research strategy and grants. Review our latest financials.

Take the Challenge

Our future is our youth

The festive season is a time to celebrate with friends and family. It can also be a hard time, where we cherish the memory of loved ones lost.

This December, the Charlie Teo Foundation (CTF) will be sharing the stories of our children and young who have been taken from us too soon, and how we are working to change the future for patients with brain cancer and their families.

In his latest letter, Charlie takes a moment to remember those who have lost their lives to brain cancer and to show you how CTF is fighting for the future of our youth.

8th December 2020

Hello friends,

As 2020 draws to an end, I find myself looking ahead… I see a brighter future on the horizon for the world, and for everyone who has been touched by brain cancer. That future may not be immediate, but I have hope in humanity that we will get there.

What is our future? It is our children and our youth. They are the ones that hold the destiny of this earth and our species in their hands.

Nothing destroys our destiny more than the death of a child. It is a combination of the incongruity of a parent out-living their offspring, the innocence of a child, the injustice of a disease where the victim is blameless and the unfairness of taking someone before they get to experience all that life has to offer. As a neurosurgeon I sadly see this all too often. I never forget the loss of a child.

What is our future? It is our children and our youth. We fight for their future.

Harry (pictured) was a patient of mine many years ago, yet I recall his story almost on a daily basis. He died of a brainstem glioma at the tender age of 7. In his 7 short years he demonstrated amazing personality traits. Extreme compassion. Nurturing and kindness to his younger brothers. Phenomenal courage and maturity in his approach to his terminal disease. A positive attitude that was contagious to his family and carers.

I often ponder on how the world would have been a better place if Harry could have lived a full life. He may have been a motivational speaker, a respected leader or a diplomat. He may have found the cure for cancer or invented a sustainable energy source. How sad that we will never know the potential contribution that Harry may have made to our humanity.

Our children are our future. They are our hope. How then does a disease that kills more children in Australia than any other disease, receive very little funding from our Government? Brain cancer is ranked NUMBER 1 for its socio-economic impact on society because it not only kills children, but it is also the most common cause of cancer-related death in young adults (AIHW 2017). It knocks our young out of the workforce and society in the prime of their life.

When funds and resources are allocated to the right people and right projects, miracles can happen.

My soul is more ablaze than ever with fierce determination to change this. I am confident that CTF is on the right track to achieve change. When funds and resources are allocated to the right people and right projects, miracles can happen.

Despite the challenges of this year, COVID-19 has not halted our efforts. I am pleased to announce that over the last 6 months since I last wrote to you, we have awarded 3 new brain cancer research grants totalling over AU$800k to those we have found and consider to be the best brains from Australia and around the globe. Let me introduce you to our newest researchers:

Dr Y. Alan Wang - A new experimental drug

We’re bringing new treatments to the table

We’ve encouraged the collaboration of an Australian pharmaceutical research company, Pharmaxis, and a cancer biologist at one of the most prestigious comprehensive cancer centres in the U.S., MD Anderson, to test new experimental drug PXS-5505. The Pharmaxis drug has already received U.S. Food and Drug Administration approval for treating myelofibrosis, a type of blood cancer. The drug has the potential to treat brain cancer, by breaking down the tumour’s surrounding environment to enhance the effect of treatments. We have awarded the team $187,000 to conduct the experiments it needs to prove that the drug will facilitate the killing of brain cancer cells. This work will fast track PXS-5505 to potentially being tested in clinical trials of brain cancer patients.

A/Prof Jeff Holst - Starving brain cancer

We’re cutting off its energy supply

A biomedical scientist at the University of New South Wales, we have awarded $136,500 to Jeff to find a way to stop the growth of brain cancer by cutting off its energy supply. We will provide fresh brain tumour samples from the Charlie Teo Foundation Brain Tumour Bank for his team to look at starving cancer cells of the essential nutrients needed for their growth and survival. This research will build upon the work of our Cancer Genomics – The Next Level project as the metabolomics data collected on the energy sources feeding brain cancer cells will be integrated and matched with the genetic data, creating the ultimate roadmap for destroying brain cancer.

A/Prof Peter Fecci - Unshackling the immune system

We're sending in the troops

After decades of failures, scientists finally found effective ways of turning the immune system against cancers (known as immunotherapy) with spectacular results – except for in brain cancer. Peter, a neurosurgeon from Duke University in the U.S. is an expert on T-cells. These T-cells are part of our immune system that locate and eliminate potential threats to keep you healthy. The problem with brain cancer is that the T-cells are often trapped in the bone marrow. Peter was one of the first to identify this T-cell dysfunction in brain cancer. Working alongside 2012 Nobel Prize winner in Chemistry, Prof Robert J. Lefkowitz, we have awarded the team $477,343 to find out how we can release the T-cells from the bone marrow so they can travel through the body to fight the brain cancer.

We also have some exciting new projects in the pipeline that I will announce in 2021.

Further, my pledge to you remains strong that we will stay lean and transparent. Our costs remain at under 20% of total income (which include both admin costs & fundraising costs) since we launched in 2018. To our loyal volunteers and companies that support us pro bono – you know who you are – I thank you wholeheartedly.

My soul is more ablaze than ever with fierce determination to change the future for people diagnosed with brain cancer.

This month we are sharing the stories of families who have felt the heart-breaking loss of a loved one to brain cancer. These stories demonstrate the tremendous courage that people show when facing diagnosis with a terminal disease.

Whether you have been personally affected by brain cancer or simply are shocked by the statistics, I invite you to join me. Read these stories. Share them with your friends. Stand up and act. Spread the word about brain cancer. Give by clicking the donate button below. Join me and do whatever you can to help us offer a future to people with brain cancer.

Thank you to all our supporters. Your continued generosity is a blessing and something we never take for granted. You believe in our approach to funding brain cancer research and I am humbled to carry the torch with you into the new year and beyond.

Let’s keep working together to ensure that our children just like Harry get to experience all that life has to offer.

Charlie

Prof Charlie Teo AM
Founder

P.S. Read more about our game-changing research strategy and grants. Review our latest financials.

Please Donate

How hope keeps us going

Today, in brain tumour awareness month, we take a moment to celebrate over 2 years of the Charlie Teo Foundation (CTF) with the release of Charlie’s letter.

On the 1st of March 2018, Charlie officially launched CTF to shake-up the way brain cancer research is funded. Charlie has never been satisfied with the status-quo. That’s why CTF is all about radical thinking to find a solution to brain cancer.

In this letter, Charlie reflects on the challenging times we face and how through this, CTF stands strong in our fight against brain cancer.

5th May 2020

Hello friends,

This week I operated on a courageous 29-year-old. She had a rapid recurrence of her brain cancer despite best standard treatment. Her devoted and loving husband held her hand throughout the pre-operative visit and gave nothing but unconditional support. Her eyes betrayed any outward pretence of bravado… she knew this would be her last chance of life. He knew it too.

All my patients are kind enough to show appropriate concern for the current pandemic. I am acutely aware, however, that deep within their souls I’m sure they are wondering why society appears to have forgotten their disease that carries an almost 100% mortality and for which governments contribute very little funding. I have pledged to stay the course, beat their drum, be their voice and relentlessly pursue funding opportunities by raising awareness and lobbying the government.

Death and dying are not unfamiliar to me. Although we are facing a global challenge never before witnessed, it is a reminder of how fragile life is, how important our health is, how home and family are paramount and how hope keeps us going.

My promise to you is that CTF will not lose sight of our purpose. We will continue to be transparent about our financials and disruptive in our approach to research.

“Although we are facing a global challenge never before witnessed, it is a reminder of how fragile life is, how important our health is, how home and family are paramount and how hope keeps us going.”

Of the $11 million raised for CTF over the last 2 years so far, we have committed $4 million to brain cancer research and our total costs are 19% of total income.

But we are not spending for the sake of spending. We measure our success on impact. CTF has a clear strategy that I really feel is going to move the needle. I want to finally see an improvement to brain cancer survival rates, something that hasn’t happened in over 35 years.

Let me introduce you to some of our newest impassioned, left-field and unconventional researchers and their grants that we are awarding in 2020.

Dr Joshua Chou – Out of this world!

We’re on a space mission

A biomedical engineer at the University of Technology Sydney, Joshua is the first in Australia to develop a microgravity device. Inspired by a chance encounter with Stephen Hawking who told him to “remember that nothing defies gravity”, Joshua has shown that altering gravitational forces causes cancer cells to stop growing. We’re funding him to study this in brain cancer. He’s also sending brain cancer cells into space to the International Space Station for 7 days to further study this phenomenon at ZERO GRAVITY.

A/Prof Hong Chen – Nasal drug delivery

We’re breaking down barriers

A biomedical engineer at Washington University in St Louis in the U.S, Hong is tackling a serious problem with treating brain cancer. The blood brain barrier protects the brain. It also makes it extremely difficult to get drugs through it to treat the cancer. She is using a novel approach to bypass the barrier and carry the drugs to release at the cancer site by combining three different techniques – nasal delivery – nanoparticles – focused ultrasound.

Dr Kristina Cook – The body clock

We’re giving the gift of time

I have always been fascinated with the circadian rhythm and how it impacts how we treat brain cancer. A cancer biologist, cancer survivor herself and up and comer brain cancer researcher at the University of Sydney, Kristina has worked with the 2019 Nobel Prize Winner in Medicine and is applying her learnings to brain cancer. She is our very first recipient of a Teo Research Rebels grant, exploring whether the body clock can be used to synchronise brain cancer cells to a time of day where they are most vulnerable to attack.

Dr Roel Verhaak – Saving kids & man’s best friend

We’re looking for the key driver

What drives brain cancer is currently unknown. Roel’s computational brain cancer biology team at the Jackson Laboratory in the U.S has helped to treat dogs diagnosed with brain cancer. What they discovered in trying to help sick dogs is that they develop brain cancer very similarly to brain cancer in children… So, we’re funding the lab to study those similarities to uncover the potential driver of childhood brain cancer.

And this is just a glimpse into our research. If you find it fascinating like me, you can find out more about our Research Projects.

All of these incredible researchers are thinking outside the box, and that’s exactly what I want to encourage. Let’s break-down silos! Let’s work together! Let’s share data, knowledge and experience!

“My plea with all our supporters is to approach brain cancer with determination, community spirit and a humanistic attitude.”

COVID-19 has underscored the importance of dealing with a serious illness as a community and with a humanistic approach, not individualistic. My plea with all our supporters is to take those very principles and continue to approach brain cancer with the same determination, community spirit and humanistic attitude.

I want to thank all those incredibly kind and generous people and organisations who have continued to donate to CTF despite hard financial times and to wish everyone all the very best for the year to come. You are offering hope to people with brain cancer, and that is a beautiful gift.

Thank you from the bottom of my heart.

I would like to personally invite you to join me on Facebook Live this May to hear me talk more about how hope keeps us going and to have the opportunity to chat with me. Further details will be announced shortly.

Charlie

Prof Charlie Teo AM
Founder