Professor Ursula Kees’ Farewell Letter

Dear Foundation Supporter,

I have dedicated 34 years of my life to studying infant cancer at the Children’s Leukaemia & Cancer Research Laboratory.

With a grateful heart, I say thank you to the Foundation and its supporters for bringing me from Switzerland to Perth and giving me the chance to lead the Laboratory. It is with some sadness, that I announce that I have come to the end of my time as one of the founding scientists of the Children’s Leukaemia & Cancer Research Foundation (Inc.) (CLCRF) Laboratory.

During these 34 years, I have been struck by one word to describe the effects of infant cancer: AGGRESSIVE. Cancer in children is not the same as adult cancer. An adult cancer patient will experience five to 30 years of life lost due to cancer and its treatment. A child who is under 12 months of age is likely to lose 67 years of life through cancer and its treatments.

Sadly, one in 500 Australian children will develop cancer before age 15. Childhood cancer is still the leading cause of death from disease for Australian children.

Our Laboratory team has contributed to a world-wide effort to find better therapies for our young cancer patients – with great outcomes. In the mid-eighties, many patients did not survive. Today, successful therapies are available for the majority of our young cancer patients.

Here is a big BUT. Some of our patients initially respond to the therapy they are given, but soon the disease is back. This is devastating for the patient, the parents and siblings, for the doctors and nurses and for the researchers. My desire to help children survive through this terrible disease has driven me and my team these 34 years. We search for answers to fight childhood cancer in the Laboratory to bring better therapies to the patient.

For each patient, a treatment plan is worked out. The length of therapy may be a few months or up to three years. A patient may receive one form of treatment or a combination, depending on what researchers have found to be the most effective in destroying the patient’s particular type of cancer cells.

The most common types of treatment are chemotherapy, radiotherapy and surgery. I started in the CLCRF Laboratory in 1984, at a time when a new treatment was talked about, called ‘bone marrow transplantation’. Dr Michael Willoughby, the specialist who diagnosed and treated childhood cancer patients at the children’s hospital, was a pioneer of this treatment. In what turned out to be a great collaboration, our Laboratory team was able to contribute to the Bone Marrow Transplantation Program at Princess Margaret Hospital. Many lives have been saved through this Program.

Some patients receive chemotherapy over three years – a very long time. For the first few weeks they are in hospital and afterwards they have to come to the children’s hospital for treatment – many times over three years.

They are given up to 12 different drugs that destroy the cancer cells. However, these very potent drugs can also cause damage to the patient’s healthy cells. These effects are short-term and long-term, because they cause harm to the growing bodies of the young patients.

Long-term effects of the treatment can be heart damage, second cancers, lung damage, infertility, cognitive issues, hearing losses and much more. Two-thirds of those who survive must face at least one chronic health condition for the rest of their lives. So, our key goal in the CLCRF Laboratory is to find therapies that have none of these long-term effects.

Leukaemia is a cancer of the blood. The leukaemia cells multiply uncontrollably, such that they crowd out the healthy blood cells. Leukaemia is the most common cancer in children. In a world-wide research effort, we helped to develop treatment protocols for leukaemia patients. They are very successful – today more than 85% of patients survive.

Sadly, this is not the case for babies who are diagnosed with leukaemia. Less than 40% survive. Our Laboratory team has focused on these very young patients, to find out why they do not respond to the drugs as well as older children do. What is the difference?

We found that the ‘mistakes’ or mutations that turn a healthy blood cell into a baby’s leukaemia cells are different from those in older children.

We managed to grow leukaemia cells from babies in the Laboratory, which was only possible because Jette Ford from our team has the skills to keep the leukaemia cells alive, such that they multiply – and we have a cell line.

Without these unique cell lines, our research to find better therapies could not have happened. The cell lines are absolutely critical to make a change for our youngest leukaemia patients. We screened many drugs that have come to market, and we found some that can destroy the leukaemia cells from the babies. Not only that, we also found out that these drugs work very well in combination. Best of all, these new drug combinations have fewer side effects.

It’s a matter of life and death.

By giving to the CLCRF you can help to improve the survival rate of children with cancer and better their response to treatment.

I am proud to say that our CLCRF Laboratory has attracted worldwide attention with our research into infant cancer. In Perth, our Laboratory boasts cell lines for testing that have been used across the world so that we can develop the best drug combinations to treat childhood cancer.

The CLCRF Laboratory is not government funded. Only one per cent of government funding is given to children’s cancer research. That is why your help is vital in the search for better treatment for children with cancer.

We rely on you to continue the dream of improving the lives of children with cancer. You can do this by investing in the legacy of research that we started.

 There are still many drug combinations that our laboratory aims to test to better the lives of children with cancer. This testing is vital so that we can see more children survive, but we cannot do this without your help. Your money goes towards increasing their chances of survival and enhancing their lives.

In order for the Laboratory to continue with this life-changing research, we need your help. So please dig deep and give generously to the CLCRF.

To demonstrate my belief in this key research that the CLCRF Laboratory is leading, I will continue to be a board member of the CLCRF.

You’ve been so generous in the past, we are very thankful. The wonderful team of researchers that I have lead for 34 years is working around the clock to find the answers to make children’s lives better. But time is running out, so make a donation now to the Children’s Leukaemia & Cancer Research Foundation (Inc.) to help these little ones who suffer so greatly.

Yours sincerely,


 Professor Ursula Kees

The Great Chop

Children’s Leukaemia & Cancer Research Foundation (Inc.) ambassador, Kerrin Hampson, will be doing ‘The Great Chop’ – she’s shaving off her beautiful long hair to support Finlay Higgs, who has Hepatoblastoma, a rare liver cancer. She aims to raise $1,500 for the cause!

As to why she’s cutting off her hair, Kerrin went through a very painful time when her own son, Marley, was diagnosed with cancer. In Kerrin’s own words:

“No family walks exactly the same path during treatment, but walking a mile in the Higgs’ family’s shoes would give anyone blisters. I know the money will go exactly where it needs to go to help find a cure.”

So, what is Kerrin and Marley’s story? Kerrin explains why supporting children’s cancer research is so close to her heart.

“Where do I start? I shaved my head for the first time in 2013. That was the year that my own son, Marley, finished treatment. After he finished, we have remained involved in the raising of awareness and funding of research into children’s cancers, with the hope that one day a cure will be found.

“I have grown my hair since then with the idea in mind that I would shave next year when Marley has the 5 year, all clear. I am planning a celebration and thought it would be a great addition to the day. I woke up this morning (31 October) and was just over the washing, drying, making it tidy for work grind. I decided now is the time. Why put off tomorrow what I can do in a couple of weekends? I will cut it off. I will raise money beforehand and I will donate the funds to the Friends of Finlay Camp Out 2017.”

You can support ‘The Great Chop’ now at

If you want to support childhood cancer research and attend Friends of Finlay Camp Out on Saturday 25 November, just register now!

Child Health and the Wealth of Nations

Staff of the Children’s Leukaemia & Cancer Research Foundation (Inc.) (CLCRF) were privileged to attend the Telethon Kids Institute Annual Community Lecture on Wednesday evening, 1 November at the Heath Ledger Theatre in Perth.

Each year, Telethon Kids Institute brings a world-renowned international expert to deliver a free presentation to the community.

This year, internationally renowned Harvard health economist and demographer from the US, Professor David Bloom, spoke at the lecture about ‘Child Health and the Wealth of Nations’.

He gave an insightful and thought-provoking talk about how any country that wants to grow its economy needs to pay close attention to the health of its smallest citizens: children.

It was a very informative night and provided a great deal of food for thought about how vital it is to protect the health of children. David Bloom’s lecture reinforced the importance of CLCRF’s mission to raise money for children’s cancer research.

If you want to give to children’s cancer research, just head over to our Donate page.

Dr Stirnweiss Makes Inroads into Fighting Resistant Cancer

Last year Dr Anja Stirnweiss, Senior Researcher at the Telethon Kids Institute, received a Children’s Leukaemia & Cancer Research Foundation (Inc.) (CLCRF) Project Grant that enabled her to evaluate pathways associated with drug resistance in NUT midline carcinoma, a type of aggressive cancer.

Further to this experimental work being conducted and analysed, Dr Stirnweiss submitted a Small Grant Application to CLCRF for support with the costs to finalise and publish the findings of this project.

In NUT midline carcinoma, the patient’s genetic material is incorrectly repaired, which leads to the joining of two genes (called BRD4 and NUT) and creates a new hybrid gene that causes the cancer. A new class of cancer drugs called iBETs, designed to block the function of BRD4, are currently assessed worldwide in 21 clinical trials for patients with leukaemia, brain tumours, aggressive breast cancers and NUT midline carcinoma.

Dr Stirnweiss’ findings indicate that the therapeutic benefits of these drugs are limited through the acquisition of resistance. This has important clinical ramifications.

For the study, she and her team used a unique collection of cell lines, obtained from NUT midline carcinoma patients, to identify drug-induced changes in gene expression. Dr Stirnweiss then performed a correlation analysis to identify changes that are unique to iBET-resistant cells.

Network analysis, which assesses how those genes are functionally connected to each other, highlighted the oncogene FOS to be a central player of the gene network that is associated with drug resistance. Removal of this gene from the resistant cells showed that FOS is not a driver of resistance, but an ideal marker to predict whether the cancer cells will respond to iBET drug treatment. Ultimately, assessment of FOS could be used in the clinic to predict whether patients will benefit from iBET treatment.

It was agreed that the findings from this substantial body of work is highly relevant to patients with NUT midline carcinoma and other cancers with BRD4 involvement. Therefore, the findings should be made available to other researchers and clinicians. To publish these findings in the highly prestigious journal, Molecular Cancer Research, minor work needs to be done. When completed, Ms Mahalia McEvoy, an outstanding young researcher who conducted experiments essential to the proposed manuscript as part of her Honours studies, will assist Dr Stirnweiss with writing the manuscript.

The Foundation approved a budget of $14,276 to cover these publication costs. Dr Stirnweiss passionately believes that this research presents a unique opportunity to make a difference for patients suffering from NUT midline carcinoma.

Congratulations and thank you to Dr Stirnweiss for her outstanding scientific contribution to cancer research.

Cancer group’s $1m a year offer

westaust-21oct2017The West Australian
Cathy O’Leary Medical Editor

A WA children’s cancer research group will direct $1 million a year to the Telethon Kids Institute, in a new funding agreement to ramp up groundbreaking research.

For more than 30 years the Perth-based Children’s Leukaemia and Cancer Research Foundation has been raising money for research into childhood cancers.

Board chairman Geoff Cattach said the three year agreement with Telethon made sense and would help raise the profile of all the research.

The foundation was founded by Peter Harper, whose daughter Jennifer was diagnosed with leukaemia in 1977. When he discovered there was no research into children’s leukaemia being conducted in WA, he set out to raise money. Sadly, Jennifer died in 1978.

The foundation was established at Princess Margaret Hospital, and in 1984 Swiss-born scientist Dr Ursula Kees was recruited from the German Cancer Institute to head up its research laboratory.

Mr Cattach said the new collaboration was designed to get maximum benefit from donations from the community to help sick children.

“I think it will be good for the foundation’s profile but we’ve also got a pretty solid base in terms of the people who contribute to us,” he said.

“I often refer to them as ordinary Australians, but of course they’re not ordinary at all.”

Raffle Winner Announced

Our ‘Lucky Numbers’ Raffle #43 (Permit No LS210135917) was drawn on Thursday 19 October. Winning ticket No 4823.

The Winner of the $15,000 CASH has now been contacted and is very HAPPY !!

Our next raffle commences on the 23/10/17 – if you would like to purchase tickets – please ring our Raffle Hotline 1300 139 651 OR head to our raffle website:

Thanks to all who supported this raffle and helped raise money for vital research into childhood cancers

2017 Southwest Bike Trek

Written by Eric Maddock – Trek Organiser

The Children’s Leukaemia & Cancer Research Foundation’s 2017 Southwest Bike Trek started off in Mandurah on Monday 9 October and finished in Augusta on Saturday 16 October. Even with reduced numbers of riders taking part we still raised in excess of $23,400.

Our small number of riders had our ranks increased for a couple of days between Harvey and Busselton with a large group of riders from the Bunbury Over 40s Cycle Club, whom I would like to thank for their participation. I must also say a huge thanks to all the Lions and Rotary Clubs along the way who provided the much appreciated support for our riders of food and accommodation, as well as various monetary donations.

Others who assisted along the way were the ladies from the Binningup Seniors Club who provided not only a beautiful lunch but a monetary donation as well. The ladies from the Harvey Professional & Business Women’s Association also assisted with homemade biscuits for various tea breaks along the way and with providing our afternoon tea at the Harvey Shire offices in Harvey.

Further acknowledgements that need to be made are to our various support crew; Norma Cox, Wendy Sims and Ed Pereira for driving the lead and following vehicles and Kay Tonzig for acting as our first aid person. Without their support this ride would not have been possible. We were also assisted along the way by Jarrah Infusion at Pinjarra, Equinox Cafe at Busselton, and the Deck Chair Cafe in Augusta who provided the riders and support crew with the necessary cuppa and cake. And, of course, it would be remiss of me not to acknowledge, Annette, my wife for all the work she did assisting me with putting the whole thing together.

The ride was a great social event as well as fundraiser and we enjoyed lovely weather for the majority of the time. We only had about three hours of rain on the Tuesday but that’s life and no one was complaining anyway. So overall a good time was had by all.

Looking forward to next year when I hope we will have a full contingent of riders (25 to 30). Hopefully the riders from this year will spread the word so that we can do something amazing to raise further money for research to help kids fight leukaemia and cancer and have fun doing it.

Shake a tin for Child Cancer Research!

Justin Bruce has a Children’s Leukaemia & Cancer Research Foundation Inc. (CLCRF) tin at his workplace, Statewide Bearings in Kewdale. Statewide Bearings specialises in the procurement, supply and support of bearing and power transmission products. Justin is the Financial Officer at the organisation.

When Justin, age four, was diagnosed with leukaemia, his family became involved with the CLCRF. Justin wanted to help those kids fight this disease, just as he had, and today he is one of our most dedicated volunteers and a board member for the CLCRF.

Want a simple and easy way to make a difference in the lives of children with cancer? Ask for a Children’s Leukaemia & Cancer Research Foundation Inc. tin that can be placed in your school, workplace or club. Do you know that a tin can collect up to $300 to help better a child’s life?

Just like Justin, if you would like to place a CLCRF tin at your workplace or organisation, please contact the office on (08) 9363 7400 or email [email protected]!

Above and Beyond $10,000!

For the month of August 2017, Children’s Leukaemia & Cancer Research Foundation Inc. (CLCRF) was one of three charity organisations competing in the ‘Vote for Good’ Community Reward Grant Program held by Beyond Bank.

The organisation that had the greatest number of online votes on the Beyond Bank website by the end of August would be awarded a $10,000 grant from the bank. While CLCRF were mostly in the lead, the race to gather votes from the community was tense as the other charities were not lagging far behind with their votes.

At the end of the month, we waited with anticipation to find out which organisation had the $10,000 grant. We were not told who the winner was in September, however Andrea Alexander, CLCRF’s Executive Officer, was advised to ‘prepare a speech – just in case’ for the Community Reward Grant Awards Night in October.

Beyond Bank held the award night on Tuesday 3 October, and revealed the winner of the $10,000 grant. We were thrilled to learn that CLCRF had gathered the greatest number of votes from the community and won the $10,000 grant!

“Firstly, thanks to the Beyond Bank staff – they were the ones that chose the charities to support in WA, secondly to our wonderful supporters for voting for us and lastly but not less – to Beyond Bank for this amazing grant,” Andrea stated.

CLCRF wants to thank Beyond Bank as well as each and every single person who voted for us in the program. We could not have won without your wonderful support! It is because of Beyond Bank and your vote that we now have $10,000 to add to child cancer research funds! Rest assured that CLCRF will spend the $10,000 wisely.

Spoilt to Raise Money for Child Cancer Research

The Spoilt Hair Retreat in Wembley raised money for Children’s Leukaemia & Cancer Research Inc. (CLCRF) by holding a ‘Kids Cuts for Cancer’ event on Sunday 17 September. The event was held in honour of Spoilt Hair Retreat’s owner, Elsa-Rene Mitchell’s 5-year-old cousin, Grace, who is battling leukaemia.

“She has endured the harsh treatments that come with battling her disease and the ongoing effects these treatments have on her body,” said Elsa-Rene.

There was a fantastic turnout of children and their parents on the day. The Spoilt hair team dressed in fancy dress (fairies, Princess Elsa, Batman, Star Wars characters and Dr Seuss) while they styled crazy haircuts for children and coloured their hair in bright colours like pink and blue. There was also a cake stall, balloons, laughter and lots of glitter!

By the end of the day, $2,250 was raised for the CLCRF to support child cancer research! What a fantastic result and the CLCRF want to thank Spoilt Hair Retreat for their passionate dedication in raising awareness and funds to help children with cancer.

If you would like to hold an event to give to children with cancer, just start a fundraising page and share it with friends and family!

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