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Friends of Finlay Camp Out Radio Interview at 98Five FM

On Monday 6 November, Katey Higgs joined Mike Crichton on Mornings of 98five FM to talk about the Friends of Finlay Camp Out on Saturday 25 November at Lathlain Park.

Katey’s son, 4-year-old Finlay Higgs, has been battling Hepatoblastoma, a rare form of liver cancer. She talked about why she decided to hold a Friends of Finlay Camp Out to support children’s cancer research through the Children’s Leukaemia & Cancer Research Foundation (Inc.).

Listen to the full interview below.

Podcast: Katey Higgs with Mike on 98five’s ‘Mornings With Mike’

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,

ursula-signature

 Professor Ursula Kees

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.”

Climb for a Smile to Support Children with Cancer!

This event has unfortunately been canceled.

Climb for a Smile with hundreds of people on Sunday 10 September! Participants will walk or run up 50 floors (that’s 1,042 steps) of Brookfield’s 108 St George’s Terrace to raise funds for children’s charities including Children’s Leukaemia & Cancer Research Foundation (Inc.).

Hosted by Rotary WA, Climb for a Smile kicks off from 7:30am on Sunday 10 September. Corporate professionals through to school students will be walking or running up 50 floors to raise money for the charities. The climb will only take 10 minutes up to one hour depending on your fitness level. Register now!

One of the climbers on the day will be Mark Daniels, a 24-year-old Through Knee Amputee currently serving in the Royal Australian Navy, who will be going up the stairs with a prosthetic leg. After a near fatal motorbike crash in December 2015 where he lost his leg, Mark now dedicates himself to keeping fit and motivating others by using his story to inspire and educate. Mark explains why he wants to participate.

“These kids are facing something that most of us couldn’t even comprehend as adults let alone as a child. I want to show them that their disabilities don’t limit their abilities at all, when life throws you a curve ball you’ve got to hit back as hard as you can. They’ve been given the short straw and it’s going to be a huge journey but as long as they keep pushing, then they will reach the top.”

Here’s your chance to raise vital funds for cancer research for CLCRF in an active, fun event. Head over to www.climbforasmile.org.au and register yourself or your team and raise funds for CLCRF. If you have a team of greater than four, email Rob Bunning.

Podcast: Mark Daniels on 6PR – Monday 14 August – 1:45pm

Podcast: Mark Daniels on 98five with Jeziel on Drive – Friday 18 August – 4:20pm

Podcast: Mark Daniels on 6IX – Wednesday 23 August – 7:20am

Cracking the Cancer Code for Kids

‘Excitement’ and ‘cancer’ are two words that shouldn’t really go together, until you add the word ‘hope’ to the sentence. Those are the words flowing out of the mouths of researchers from the Telethon Kids Institute in Perth as they edge closer to answering what causes pediatric cancer, thanks to funding by the Children’s Leukaemia & Cancer Research Foundation (Inc.).

Dr Mark Cruickshank, who leads the Cancer Genomics and Epigenetics team, said it has been a long road to reach the pointy end of years of research and is excited to be on the verge of cracking the cancer code for kids. “This is one project where we have no idea what causes leukaemia in infants and that’s a really big focus of mine at present, because I’m very close to finding what we think are the answers to that conundrum,” Dr Cruickshank said. “It has taken more than four years to reach this stage, by studying the gene sequencing mutations in cells. This in turn has now escalated the drug therapy studies that are built on that gene research.”

Dr Cruickshank revealed that the research team has been analysing data from cancer cells of infants to identify mutations that are not present in patients’ healthy cells. As infants are ‘brand new’ to life they have had little time for their cells to mutate outside the womb, so there is something genetic causing them to have cancer. “We’ve found some extremely exciting signals from the data, statistical signals, and now we need to test these out in the laboratory. This could be a huge advancement and it could open up a lot of different avenues, for example we could look at cohorts of patients to see if a mutation is associated with treatment outcomes,” he said.

The genetic research and understanding has been crucial to take the team to this next stage as the make-up of the leukaemia affects whether the treatments will work or not. Having a genetic understanding can cut out the guessing games so patients can receive doses of drugs that are effective and also minimise the side effects to their bodies. “We already know some drugs fail in some patients and we think this is due to the genetics,” Dr Cruickshank said.

 While researchers may have found the causes of the diseases, the next step is to develop the best treatment protocols to deliver to patients and their families.

“I don’t really think that gaining short amounts of extensions of life is where we need to end up, we really need to cure these diseases. I want to reach a point where the therapies aren’t putting the families through a year’s worth of pain and then a lifetime of uncertainty,” he said.

“I believe in finding absolute cures – and that is the goal of the research, to do that we need help. To accelerate the research we need to be able to test the drugs in all different ways and we need the best technologies. We have the capacity to do this, but it takes money to do it.”

If you would like to contribute support to Dr Cruickshank and his team’s research to help make a difference you can donate to CLCRF or contact the Foundation via email or phone +61 8 9363 7400 for further information.

Read a recent paper on infant leukaemia cell lines and drug screening published in Volume 31 of Leukemia Journal by Dr Mark Cruickshank

Sharing a unique story of survival

Mundijong resident and cancer survivor Georgia Lowry spoke about her new book Growing Georgia at the Byford Gala Ball last month. The 22-year-old survived bone cancer* as a baby and the book details her journey. Ms Lowry said her family inspired her and that Wilma Mann the author of the book helped her put it all together. “The process was a lot of fun,” she said.

“Wilma asked me many questions that were recorded and she managed to bring my story out in a way that really reflected who I was and what I want to say.” Ms Lowry said she hoped people would read it and become more aware of bone cancer. “Just because you, a family member or a friend has cancer or an illness it is definitely not the end of the road,” she said.

“Positive thinking and the power of the mind does a lot of things. “Well, it has done for me anyway.” Ms Lowry said she was lucky and thankful for the love and support she had from her family and friends.

“I’m really focused on my role as ambassador for the Children’s Leukaemia and Cancer Research Foundation,” she said. “I want to help find a cure so kids like me have a better outcome.” Ms Lowry works at a childcare centre and in her spare time rides her horses three days a week in preparation for competitions on the weekends but her main aim was to help with research.

“I hope one day to find a cure,” she said. “There is always hope and if anyone needs to talk to someone reach out to me. “I have a public Facebook page and will always talk to someone going through this.” Ms Lowry said if her journey could help even just one person she would be happy.

For more information visit Facebook.com/GeorgiaLowryPublicSpeaker.

Source: Serpentine Jarrahdale Examiner Newspaper, April 13, 2017 – Page 3
Written by: Juanita Shepherd

*Story Correction – Georgia Lowry was diagnosed with and has survived Acute Lymphoblastic Leukaemia.

Poseidon Primary Fundraising for Child Cancer Research

On March 16, Poseidon Primary School, a small school of 370 students based in Heathridge, raised $2,269.30 for Children’s Leukaemia & Cancer Research Foundation (Inc.) (CLCRF) through their annual ‘hair-raising’ fundraising event.

Aroha White, one of the students of the school, was diagnosed with leukaemia and the school teamed together to raise money for CLCRF. Aroha’s mother, Emma White, as well as six school staff members were sponsored to change their hair in different ways.

A brave and excited Emma had her hair coloured with hairspray, then it was shaved off completely in front of the school. The school’s principal, Peter Blackford, was brave enough to have his hair coloured and shaved by Emma and Aroha White.

Many of the students also coloured their hair with hairspray for the special event.

A coin challenge after the hair shaving took place on their basketball court where each class had their own line to place coins and notes. The winner of the longest line went to Mrs Isbister’s Pre-Primary / Year 1 class. Some of the parents generously put down $50 notes in the challenge, which greatly helped in the fundraising.

Eco Faeries were painting children’s faces and engaging students with other fun activities.

Overall, the event was very inspiring for students and staff, and a fantastic amount was raised for CLCRF. Thank you Poseidon Primary School for your generosity and efforts towards raising money for child cancer research!

If you would like to start your own fundraising event, just start a fundraising page and share your link with friends and family!

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