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Friends of Finlay Camp Out at Lathlain Park raises funds for research into rare childhood cancers

CAMPING is one of Finlay Higgs’ favourite outdoor activities and a happy escape for the five-year-old, who continues to fight a rare form of childhood cancer. At three years old, Finlay was diagnosed with stage four high risk hepatoblastoma, a rare type of liver cancer, before undergoing multiple surgeries and treatments. While undergoing treatment the Joondalup toddler wasn’t able to have a normal childhood and enjoy the things he loves like camping, so the Higgs’ family created a fundraising initiative in honour of children like Finlay.

This month, Finlay and his family invite the Perth community to attend their second annual community campout at Lathlain Park to raise funds for critical research into childhood cancers. Held at the Perth Football Club’s home ground from October 27, the family-friendly event will include a Perth Demons football clinic, storytelling around the campfire, sing-along sessions, face painting, live music and a barbecue. All proceeds from the two-day fundraiser go to the Children’s Leukaemia & Cancer Research Foundation’s Million Dollar Project for Telethon.

Finlay’s mother Katey Higgs said last year’s campout was a huge success and since then, Finlay had made promising progress.
“Since the last camp out Finlay has started kindy and is really enjoying making lots of new friends,” she said.
“He has remained disease-free and is getting stronger and stronger.
“My favourite thing about last year’s campout was seeing how relaxed and happy everyone looked sitting around together as a family, enjoying the barbecue and listening to the fabulous entertainment.”

Mrs Higgs said the rareness of hepatoblastoma meant that much more funding for research was needed to improve the current survival rate, which varied from 20 per cent to 70 per cent, dependent on how advanced the cancer was.
“The more they discover and learn about childhood cancers, the better they will be able to treat all children,” she said.
“Without donations, there is no research.
“Without research, nothing changes.
“We want to make changes – we want childhood cancers to be universally survivable.”

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Friends of Finlay Camp Out

When: Saturday, October 27 from 2pm to Sunday, October 28 8.30am
Where: Lathlain Park
For the day’s itineraries and to register, visit friendsoffinlay.com.au/events/campout

Source:

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Katie Lush talks to 89.7fm about the South West Bike Trek

CLCRF’s very own Executive Assistant, Katie Lush, is joining this year’s South West Bike Trek. This morning Katie spoke with Sue Myc on 89.7 Twin Cities FM’s morning show about the ride, what she’s looking forward to and why she feels the need to ride for such a good cause.

In case you missed the interview you can listen below:

 

On Sunday 7 October, 12 riders will embark on a six-day bike ride from Subiaco to Augusta for the Southwest Bike Trek to raise vital funds and awareness for the Children’s Leukaemia and Cancer Research Foundation (CLCRF).

The journey across WA’s iconic South West region, which is more than 300km, will start at Mueller Park, Subiaco, stopping off en route at Fairbridge, Preston Beach, Harvey, Eaton, Busselton and Margaret River before finishing at Cape Leeuwin Lighthouse, Augusta on Saturday 13 October.

Childhood cancer is the single greatest cause of death from disease in Australian children, with three children losing their lives to cancer every week. Childhood cancer is second only to breast cancer in terms of the number of years of life lost by the disease.

Donations to the Children’s Leukaemia and Cancer Research Foundation (Inc.) help fund valuable scientific research into childhood cancers. Over the past 30 years CLCRF has made amazing breakthroughs into the treatment children receive. It is because of this research that those children have an opportunity to live long and fulfilling lives.

The first ever SouthWest Bike Trek took place back in 2002 and has raised just under $700,000 for child cancer research projects over 16 years.

If you would like to donate to help Katie and her fellow riders raise vital funds please donate now.

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Dr Sébastien Malinge Investigates Resistant Cancer Cells

French scientist, Dr Sébastien Malinge, moved from Paris to Perth six months ago to work as an Ursula Kees Fellow. He now works in a lab funded by the Children’s Leukaemia & Cancer Research Foundation within the Telethon Kids Institute. Sébastien is enjoying his time in Perth and continues his insightful research into better therapies for children who have leukaemia. We interviewed Sébastien on 12 April at the Telethon Kids Institute to learn more about him and his research.

Sébastien’s PhD research in 2006 at the Necker Hospital in Paris was focused on discovering the genetic causes of leukaemia among children with Down’s Syndrome. Sébastien then moved to the United States to complete a post-doctoral fellowship to investigate why children with Down’s Syndrome were at higher risk of developing leukaemia than children without the condition. He moved back to Paris in 2012 to expand on what he studied.

When asked about what receiving the Ursula Kees Fellowship means to him, Sébastien says he feels privileged to receive this position.

“I met Ursula in 2016 when she invited me to present my work at the Telethon Kids Institute.

“I am very proud of having received this fellowship and continue to pursue her legacy. We work towards the same goal of finding better treatments for children with leukaemia.”

Sébastien is currently focusing on building a cohort of preclinical tools to test hypotheses with the view of testing new cancer therapies. He seeks to understand why some children relapse and the reason as to why some cancer cells are resistant to chemotherapy. He hopes that his research will give some clues to develop new therapies targeting therapy-resistant cancer cells and decrease the rate of relapse.

Sébastien believes that funding into cancer research is crucial for discovering better therapies.

“Some of these leukaemia treatments for children are successful but have high toxicity. Therefore, we need funding to find better ways to maximise the well-being of these children not only during but also after chemotherapy.”

Thank you Dr Sébastien Malinge for accepting the Ursula Kees fellowship. We are excited to have you on board and look forward to learning more about your research into finding better therapies for children with leukaemia.

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We are now a part of the Western Charity Alliance


Children’s Leukaemia & Cancer Research Foundation (Inc.) is excited to be a part of the Western Charity Alliance! The CLCRF and three other charities have united to form the Western Charity Alliance; A charity collective that allows you to support four West Australian charities simultaneously to give more back to your community.

It also allows the Alliance partners to minimise fundraising costs and share the resources required to connect supporters with the impact each charity makes in WA —A unique example of how charities can work together to make a difference.

The Alliance enables community members to jointly purchase raffle tickets supporting all four causes. Find out how it all works in the video.

Buy your Western Charity Alliance raffle tickets here and support child cancer research at: https://wca.auraffles.com.au/purchase-tickets.

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Cancer Battle Humbles a President

In February 2002, former US President Bill Clinton paid a visit to 13-year-old at the time, Thomas Bloemendaal, who was undergoing treatment at Princess Margaret Hospital for Children for lymphoblastic leukaemia.

The former President was deeply moved by the courage of Thomas and his family in their struggle against cancer. Clinton held his hand and said to Thomas, “I like the look in your eye … you will get there.” The former president said that visiting the young man was an incredibly humbling experience.

“Children in that position have a certain way about them and it is extremely humbling,” Bill Clinton said.

What a poignant moment to see a former president humbled by a young boy fighting for his life.

Children’s Leukaemia & Cancer Research Foundation Inc. are continually humbled by the strength and bravery of children and their families who fight cancer. It is because of their courage that we fight so hard to raise money for children’s cancer research.

You too can make a difference and raise money for the Children’s Leukaemia & Cancer Research Foundation Inc. by starting a fundraising page now.

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Make a Difference by Saving!

Make a real difference with your savings account and open a Community Reward Account with Beyond Bank! The more you save, the more Beyond Bank will donate to Children’s Leukaemia & Cancer Research Foundation (Inc.) (CLCRF) at no cost to you!

It’s a high interest savings account and a unique way for supporters of CLCRF to give towards child cancer research. Beyond Bank will give the Foundation a Community Reward Payment based on the combined average annual balances of all supporters’ savings.

Each year, Beyond Bank generously donates over $350,000 back to not-for-profit community organisations such as CLCRF. It’s great to see a bank give so much to the community.

Show your support and head over now to Beyond Bank to start a Community Reward Account!

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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’

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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,

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 Professor Ursula Kees

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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.”

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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