CLCRF Funds Research to Slow Down Leukaemia in Children

Dr Rishi Kotecha, one of the scientists at the Perth Children’s Hospital, is leading the way in research, funded by the Children’s Leukaemia & Cancer Research Foundation Inc. This research has unlocked a vital key to slow down the progression of leukaemia in children.

The journey for a child with cancer is not a straightforward one, and has many ups and downs. Dr Rishi Kotecha says it’s wonderful when he hears from patients many years later who are well again, graduating from university or starting families of their own.  At times his job has difficult moments such as discovering that the prognosis is not good for a young cancer patient. As a result, he is determined to discover new lifelines and better treatments that can lessen the suffering of children with leukaemia.

Working together with eight scientists, Dr Kotecha’s team of researchers at the Telethon Kids Institute, may have found a vital key that will slow down progression of leukaemia in children and has opened the door to a new way of thinking about treatment. These findings have been so significant that he and lead author, Dr Laurence Cheung, published them in the prestigious Nature journal, Leukaemia.

The researched looked at acute lymphoblastic leukaemia (ALL), which is the most common cancer among children, and a specific type called pre-B ALL.

More than a third of children with pre-B ALL have bone pain and skeletal defects at the time of diagnosis so the researchers wanted to know what was causing these symptoms.

“The bone pain at diagnosis can be quite severe,” adds Dr Kotecha, “not in all cases, but in a lot of cases there are aches, pain and fractures because their bones are brittle.”

The research team set to work by creating a highly aggressive subtype of pre-B ALL in their lab models.

They were able to identify a signal produced by the leukaemia cells which instructed cells in the micro-environment to eat away at the bone.

Desperate to find out how to stop those bone-eating cells wreaking further carnage, they tried using a commercially available drug called zoledronic acid.

The drug, which was already known to be safe for children, was a game changer.

Not only did it help reduce bone fragility, it slowed the advancement of the cancer.

Sadly, Australia was found to have one of the highest rates of leukaemia in the world. The survival rates have dramatically improved over the past 60 years but it is still one of the most common causes of cancer-related death in young people.

One of Dr Kotecha’s patients, Xander Thelan, is today the picture of health. So it is hard to believe that this 10-year-old Perth boy underwent three-and-a-half years of gruelling chemotherapy to treat leukaemia and benefited from taking part in clinical trials using a novel drug that came about from the research findings.

Xander was only five when he was diagnosed with leukaemia. Thanks to clinical trials coming from this key research, Xander finished chemotherapy last year and is now doing well.

The Telethon Kids Institute is working at a local, national and international level to try to further understand leukaemia and find and test new treatments such as this one.

“We just feel so lucky to live in Australia, in a country with such good health care and the research that they’re doing, because it is world class,” says Xander’s mother, Naomi Kerp.

“It was a wonderful feeling and it’s such a long road, three-and-a-half years of chemotherapy, that when you reach the end it’s just this beautiful feeling that it’s finally over.”

Dr Kotecha says that happy outcomes such as Xander’s continues to drive him.

The CLCRF is proud to fund international class research by scientists such as Dr Rishi Kotecha, Dr Laurence Cheung and their team that leads to better outcomes for children with cancer.

Photo taken by: Iain Gillespie

Go Gold for Childhood Cancer Awareness Month in September!

September is Childhood Cancer Awareness Month and we’d love you to get involved to help shine a spotlight on the need for more research and funding.

Gold is the international colour of childhood cancer awareness, with many supporters choosing to wear a gold ribbon during September.

Every year in September, childhood cancer champions, advocates and supporters encourage iconic buildings, historic landmarks, monuments, bridges and natural environments to GO GOLD. Whether lighting up gold or by displaying gold ribbons, the global effort is making a difference. We’d love for you to be ‘Our Champions’.

Please show your support for all kids fighting cancer and their families by wearing a gold ribbon purchased from CLCRF. Our combined efforts will raise awareness and improve future outcomes for children diagnosed with cancer!

You can purchase your gold ribbons or packets of sunflower seeds from us at the CLCRF office during business hours at Unit 3/100 Hay Street Subiaco WA or alternatively give us a call on (08) 9363 7400 and we can arrange to post some out to you and your workplace.

Beyond Bank Community Morning Tea

Today Children’s Leukaemia and Cancer Research Foundation were invited to a community morning tea with our community banking partner, Beyond Bank. It was an extra big thrill to have the opportunity to meet and speak personally with Matt Taberner from the Fremantle Dockers Football Club. We know our very own Young Ambassador Georgia Lowry will be pleased with the signed poster.

Our relationship with Beyond Bank is only getting stronger with their Community Development Partnership program, of which we are proud to be a part. We’re also thrilled to know they will be joining us, through their staffing volunteer program, for the Friends of Finlay Camp Out on Saturday 27 October. So make sure you register to camp out with us and say hi to those wonderful staff members volunteering on the day.

Did you know, just by having a Beyond Bank savings account, you could be earning community dollars for the CLCRF?

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.

Click here for information about the community program.

 

Register now for the 2018 Friends of Finlay Camp Out!

Join us on Saturday 27 October, 2018 for the fun and exciting  Friends of Finlay Camp Out!

We had a fabulous time camping out with our little ambassador, Finlay Higgs, last year. This year you are invited to the 2018 Friends of Finlay Camp Out on Saturday 27 October at Lathlain Park.

The Camp Out highlights the need for increased research into Hepatoblastoma and all money raised will go to the Children’s Leukaemia & Cancer Research Foundation (Inc.).

It’s going to be a bigger event this year with: Perth Demons footy kicking, a Jumpy Castle, Superhero Entertainers, Giant Games, live music, Face Painting and BBQ dinner!

We have amazing custom-made Friends of Finlay Sleeping Bags on sale. They were a massive hit last year, so don’t miss out and purchase your Friends of Finlay Sleeping Bags filled with warm and comfortable duck down for children!

Be quick and register now!

Event: Friends of Finlay Camp Out 2018
Date: Sat 27- Sun 28 Oct
Start Time: Saturday 2:00PM
End Time: Sunday 8:30AM
Location: Lathlain Park, Goddard St, Lathlain WA
Cost: $25 for Adults. $15 for Children (11-16). FREE for children under 10.
Register at: Camp Out Registration

Chronicles of Narnia High Tea & Fashion Show

On Friday 28 September at 2pm the Bunbury Senior Citizens Club is holding a Chronicles of Narnia High Tea & Fashion Show at the Bunbury Senior Citizens Club, 1 Stirling Street, Bunbury to raise money for the 2018 Southwest Bike Trek. Funds raised from the Southwest Bike Trek will go to the Children’s Leukaemia & Cancer Research Foundation (Inc.) for childhood cancer research.

One of the participants of the Southwest Bike Trek is organising the fundraising High Tea and Fashion Show. There will be a continuous flow of tea and coffee with shared homemade treats, and Wardrobe Fashion will be showcasing the best of their evening and day wear for summer.

Not only that, the event will feature a White Witch Parade, Turkish Delight Competition, Gold Coin Pitch and other fun games such as Lucky Money Boards. Those attending are invited to wear their wedding dress or simply a crown for the White Witch Parade – prizes will go to the person with the most innovative costume! Tickets are only $20 and anyone interested in attending should contact Betty on 0419 648 260.

The High Tea will be funding the Southwest Bike Trek this year, which is held from Sunday 7-13 October and will start in Perth and end in Margaret River. To explore the Southwest on bike at a leisurely pace and meet like-minded bike riders, contact Eric Maddock on 0433 905 703 or email [email protected].

CLCRF thanks the Bunbury Senior Citizens Club and the organisers of the annual Southwest Bike Trek for their fundraising efforts to further childhood cancer research! If you are in the Bunbury area, please support the High Tea and Fashion Show by booking your tickets with Betty on 0419 648 260.

Fulton Hogan Chooses the CLCRF

On Friday 20 July, Foundation CEO, Andrea Alexander, visited the Landsdale site of company Fulton Hogan Ltd.

Fulton Hogan Ltd. has more than 80 years’ experience in the transport, water, energy, mining, civil construction and land development infrastructure in New Zealand, Australia and the South Pacific. They create communities from the ground up, starting with their own network of quarries, which is complemented by our asphalt, emulsion and precast plants across Australia and New Zealand.

Andrea was there to accept a donation of $1,000 from the employees, as part of Fulton Hogan’s safety initiative, where the company rewards the field team that works the most safely with a donation to a chosen charity.

The team based at Landsdale chose CLCRF to be the beneficiary.

Many thanks to the Fulton Hogan employees for choosing CLCRF and their generous support – this will greatly benefit research into childhood cancer research.

If your organisation would like to make a tax-deductible donation to the Foundation, find out more about Workplace Giving and see how it can benefit your organisation as well as child cancer research.

Happy 5th Birthday Finlay!

One of our favourite young ambassadors, Finlay Higgs, recently turned five on 23 July! We had the pleasure of wishing him a very happy birthday and giving him a present!

Finlay Higgs was a happy little blue-eyed, fair-haired, 18-month old boy when his mother, Katey Higgs, discovered an unusual protrusion on his stomach on the Australia Day Weekend of 2015. Doctors found that the lump on his side was caused by a large tumour distending his stomach. They diagnosed him with Stage Four High Risk Hepatoblastoma, which is a very rare form of liver cancer that is most often diagnosed in children under the age of three.

His only option at the time was to undergo surgery to remove the tumour and the diseased parts of the liver. Surgeons managed to remove the entire right lobe of Finlay’s liver, leaving only the smaller left lobe behind. They removed his gall bladder, bile ducts and also cut out a tumour from his diaphragm. Pathology on the tumour found that the cancer was active tissue, however all margins around the tumour were clear of cancer cells, which was good news.

To this day, Finlay continues to bravely fight his cancer. After multiple surgeries and treatments, his diagnosis is now Stage Four High-Risk Refractory Hepatoblastoma, and is a living and breathing miracle to have survived so far. He is receiving CT scans as well as liver function and other tests every three months.

Finlay turning five is a very happy and momentous occasion for the Higgs family! The Foundation wants to wish Finlay the very best birthday and also many, many more to come! Finlay will be the star of the Friends of Finlay Camp Out on 27 October at Lathlain. Be sure to buy tickets for the Camp Out that will raise awareness and money for research into childhood cancers!

Gracie meets Nic Nat from the West Coast Eagles

It’s not often you have the opportunity to meet your sporting icon at just six years old, but that’s exactly what happened to six-year-old Gracie who is fighting a double dose of childhood cancer, Acute Lymphoblastic Leukaemia (ALL) and Lymphoma.

Gracie attending a closed training session at Lathlain Park ahead of The Eagles trip to Victoria to take on Collingwood at the MCG.

Whilst the Eagles are fighting for a final berth on the field, Gracie has been fighting her own battles closer to home for nearly three years.

Back in 2015, after suffering urinary tract infections and severe bouts of pain for six months, she was diagnosed with Acute Lymphoblastic Leukaemia (ALL). She had only just turned three. Over the two-and-a-half-year treatment period, Gracie endured innumerable and varied chemotherapy treatments, countless invasive procedures and scans, multiple blood transfusions and platelets, regular needling and painful dressing changes, a nasal gastric tube, over 40 trips to theatre and was kept in a hospital isolation room for weeks on end, unable to leave.

She also suffered many side effects from the treatment that rid her body of the leukaemia.

Her treatment also meant she couldn’t do the things other three-year-olds would take for granted, such as a trip to the shops, swimming lessons, playing with animals and attending friends’ birthday parties, as her body lacked the ability to fight infection.

Despite all the setbacks, mother, Catherine, said despite the physical and mental traumas that no child should ever suffer, Gracie has a huge, warm personality.

“She is captivating, creative, funny, charismatic, intelligent, loving, and incredibly empathic. She always carries a beaming smile, no matter what she endures, making the two and a half years of treatment so much easier on those around her who are still struggling to come to terms with it all.

“She has the ability to always make the most of every single situation, and takes great pleasure in helping people and making them happy.”

The chemotherapy was initially successful but after five months, she showed symptoms of a virus-like illness and it was discovered that Gracie had relapsed.

This time the disease had come back refractory and it had mutated. Not only did Gracie have 70% leukemic blasts in her bone marrow, she also had a large lymphoma mass between her abdominal wall. After consulting with specialists all over the world, it was discovered that no one had ever seen a presentation like this, not in children or adults.

Gracie was immediately started a 29-day cycle of chemotherapy which required her to be an inpatient for just over seven weeks. This really took a toll on Gracie emotionally and psychologically.

Gracie was then put on a 28-day course of continuous IV Immunotherapy. It initially required a week’s stay in hospital, then the majority of the rest of the course at home. Scans at the end of this treatment had shown her bone marrow was in remission, and the tumour significantly reduced.

A second 28-day course of continuous IV immunotherapy began and Gracie is currently half way through this treatment cycle.

There is a scheduled bone marrow transplant in August, which increases chances of survival from 5% to 50%, followed by two weeks of radiotherapy.

“Gracie deserves the chance to beat this beast once and for all,” said Catherine.

“She has so much to offer this often bleak world. She is one of a kind, she is here to make a difference, and she will.”

The Children’s Leukaemia and Cancer Research Foundation wishes Gracie the best possible outcome in her up and coming treatment and we know her constant determination and a positive attitude will pull her through!

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.

Antonio’s Support for the CLCRF

Antonio Argentieri, a well-known cake decorator from Italy, has been a passionate supporter of the Children’s Leukaemia & Cancer Research Foundation (Inc.) for several years. In 2017 Antonio organised the 19th National Cake Decorating Seminar in Perth and raised funds for the CLCRF with the help of the Cake Decorators Association of WA.

More recently, Antonio has put together a ‘Cooking Charity Show’ on popular Italian television cooking show, ‘La Prova del Cuoco’ in Italy to raise money for the CLCRF. The show will air on 17-18 July at a bistro called Alla Marino in Italian city, Vasto. The show will be streamed live in Australia, Canada and USA from 5.30pm Italian time. Over two days of fun, the show will feature Italian culinary excellence from Antonio, special guests, his friends and other chefs. The CLCRF will feature during the show and viewers across the world will find out more about the Foundation and the great importance of raising funds for world class child cancer research.

When asked about why Antonio has such a heart for funding child cancer research, he believes that he did not choose the Foundation but it chose him.

“I did not choose the Foundation but the CLCRF, in a sense, chose me. I have been working with the Cake Kids Therapy group where children who have had difficulties in life are taught how to make and decorate cakes. I ‘fell in love at first sight’ with the CLCRF because I really want to give hope to children suffering from cancer.

“No one can know if among these many suffering children there may be a man or woman who will make the difference and build a hopeful future. Together we can put smiles on children’s faces by giving to the CLCRF.”

The Foundation thanks you for your passionate and invaluable support Antonio! We are deeply touched by your love for children going through such a difficult time and your help in promoting the cause of funding child cancer research in Italy and across the world!

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