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.
8 December 2020
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.
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:
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 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.
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.
Xx
Charlie
Prof Charlie Teo AM
Founder
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
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.
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 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.
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 Fellowship, 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.
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.
Xx
Charlie
Prof Charlie Teo AM
Founder
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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