News

Mothers’ Experiences Post-Childhood Cancer Treatment: A Qualitative Study

Jenny Davies is a great friend of the Foundation who is currently completing her PhD in Psychology at Curtin University, exploring the impact of childhood cancer on families. This is a topic that hits close to home for Jenny, with her daughter Amelia having battled childhood cancer when she was 12 years old.

Determined to use their experience to help others, Amelia was inspired to study medicine while Jenny pursued a PhD. On 10 August 2022, Jenny’s honours research was published in the Journal of Child and Family Studies, a peer-reviewed academic journal.

Jenny’s research is a qualitive study on Mothers’ Experiences Post-Childhood Cancer Treatment. The study highlights that the stress and anxiety that comes with a child’s cancer diagnosis does not finish at the end of treatment. Mothers, in fact, experience long-term ramifications.

Some of the key takings from Jenny’s research includes:

  • After treatment mothers must adjust to new identities as mothers of children who have been diagnosed with cancer.
  • Fear of relapse and late effects makes it difficult for mothers to develop a new narrative for their children and themselves.
  • Mothers felt guilt and regret about impact of childhood cancer on siblings and this guilt did not dissipate after end of treatment.
  • There is a need for more practical and psychological support tailored to mothers’ individual needs.

We congratulate Jenny on this wonderful achievement and we thank her for her important work. We highly recommend having a look at Jenny’s research paper to gain a better understanding of how a childhood cancer diagnosis effects the whole family.

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Fostering the next generation of researchers at Telethon Kids Institute

One of the great things about the research projects that CLCRF funds is the opportunity to foster the next generation of researchers. The Telethon Kids Institute has around 100 students enrolled from several universities around Australia, conducting research projects from laboratory-based projects to population-wide studies.

We recently met with Taylor Ferguson, a Curtin University student who has commenced the first year of her PhD in Associate Professor Rishi Kotecha and Dr Laurence Cheung’s Leukaemia Translational Research laboratory. Taylor is continuing her studies from last year, where she completed her Honours degree alongside the respected researchers.

As part of this team, Taylor has been looking at a specific subtype of leukaemia, which has a rearrangement of the KMT2A gene and is associated with a poor prognosis. “Previously, my lab did a large drug screen to identify some novel agents that could be used,” said Taylor. “So, my project is to further investigate these novel agents in detail and move them forward in the preclinical setting.” The ultimate goal is for these novel agents to be translated into clinical trials.

Confessing that this was the only Honours project she applied for, Taylor had her heart set on the opportunity to help make a difference for future generations of children. “I did a mini research project at university which was to do with infants,” Taylor explained. “This drew my attention as to how vulnerable they are, especially to the side effects of chemotherapies. So, when I saw this project, I decided that it would be something I’d be interested in, to work towards improving outcomes for these infants.”

The prognosis of infants diagnosed under the age of one with KMT2A-rearranged acute lymphoblastic leukaemia is poor, with a 5-year event-free survival rate of less than 40%. “Because they are babies, they don’t have the ability to tolerate the chemotherapies the same way that older people might be able to,” explained Taylor. “So, if you’re trying to reduce the leukaemia disease burden, you have to increase the intensity of the chemotherapy. Unfortunately, babies can’t tolerate these high doses.”

There is a significant need to find new therapies to improve outcomes for these babies, which can only come with more funding. “Just to give these babies a fighting chance, especially those with this aggressive gene rearrangement, is the reason why extra funding is needed.”

When asked what her favourite thing about her job has been so far, Taylor stated that she has enjoyed becoming part of a team. “At university, it’s very much everyone for themselves and you do your own work,” she explained. “But in this team environment, you realise everyone is working towards a common goal. And so, it’s like a little community. Everyone wants to improve the outcomes for children with cancer, and specifically in my team, it’s for infants with leukaemia.”

Although now finding her feet in research, Taylor did not always know that this was the work she wanted do. “I kind of went through every career that I possibly could. When I first went to university, I wasn’t quite sure what I wanted to do. The more I got into science, the more I decided how much I loved it. And research is like focused science in a specific area. You also have outcomes that you can build off, and which other people can use to improve treatments or therapies.”

Grateful to be placed in this role, Taylor expressed how lucky she feels to be at the Telethon Kids Institute. “It’s a very good environment and the team that I have is just amazing,” she said. “Everyone’s been very supportive, and they all help me whenever I need it, which, at the beginning was a lot.”

Taylor explained that she would love to stay in the realm of leukaemia research. “I really enjoy the work,” she said. “It’s such a horrible disease, if there’s anything I can do to contribute to the research for it, that’s the research I want to do.”

We are delighted to be able to support you­­ng researchers like Taylor as they aim to improve the lives of children with cancer. You can help support Taylor’s research, and give infants with leukaemia a fighting chance by making a donation towards childhood cancer research today. Simply head to www.clcrfgiving.org

 

Behind the lab coat: 

What do you like to do in your spare time? 

I’m a bit of a homebody. I really enjoy spending time with my family. We moved from Scotland and it’s only the five of us here, so we’re very close.

I like to just relax and just have a good time reading books, going out with friends, things like that. I’m a very simple person.

What’s your favourite genre to read?

I usually read sci-fi or fantasy.

What’s your favourite quote?

My parents always tell me take every opportunity and you only fail if you never tried. They actually say that to me quite a bit.

It’s especially relevant in research, because not everything goes according to plan but you have to keep trying and keep persisting. Resilience is what gets outcomes at the end.

Willie dyes his hair pink for childhood cancer research

The Foundation would like to thank Malcom David Morris (Also known as Willie) for raising $1225 by dying his luscious locks bright pink! Willie is a local legend at The Swinging Pig in Rockingham, where he encouraged the team and patrons to donate whatever they can in a donation tin at the bar.

When asked why Willie decided to support our Foundation, he responded with “I strongly believe every child deserves a future.” Willie also expressed that he didn’t expect to raise as much as he did. “I am very grateful to all those who donated,” he said.

We commend Willie for his fun new hairdo and thank him for choosing to support childhood cancer research, so that more children can live the long and fulfilling lives they deserve. We also thank Sally from The Swinging Pig who we believe was a huge help with Willie’s fundraiser.

If you would like to support childhood cancer research with your own fundraiser, our team would be more than happy to assist you! Simply send an email to [email protected] or call our office on (08) 9363 7400.

Beata Kotecha raises over $1000 in birthday donations!

Earlier this year, one of our generous supporters Beata Kotecha organised a charity birthday fundraiser for our Foundation. Beata organised a high tea party with her friends where, instead of presents, she asked for donations towards childhood cancer research.

Beata and her friends raised $1070 for the Foundation! “Since I’ve seen how much good work your Foundation is doing, I wish to help as much as I can,” expressed Beata. “All of the ladies who attended my high tea were very generous, so I thank all of them.”

There’s no doubt that Beata knows all about the importance of funding the research into childhood cancers, with her husband, Dr Rishi Kotecha, being an acclaimed paediatric oncologist and researcher at the Telethon Kids Institute Cancer Centre.

We are so appreciative of Beata using her birthday to make a difference in the lives of children with cancer. If you have a birthday coming up, consider asking for donations in lieu of presents!

This can be easily done through a Facebook Fundraiser. All you need to do is:

  1. Head to facebook.com/fundraisers
  2. Click “Raise Money” and select “Charity”
  3. Search and select “Children’s Leukaemia & Cancer Research Foundation”
  4. Fill out your fundraiser details and click “create”

Please let us know if you decide to create a birthday fundraiser for our Foundation so we can thank you and help you spread the word! Simply send us a message on Facebook, email us, or call our office on (08) 9363 7400.

Local Immunotherapy

Local Immunotherapy for Sarcoma

Our Foundation has helped fund so many important research projects at the Telethon Kids Institute, working together with the Institute for decades to help improve the lives of children battling cancer. One of the exciting research projects that we are currently helping to fund is the Local Immunotherapy for Sarcoma project, headed by Associate Professor Joost Lesterhuis.

Joost is the Head of the Sarcoma Translational Research team at the Telethon Kids Cancer Centre, a team that aims to discover and develop safer and more effective treatments for sarcoma through inventive and rigorous research. One of the team’s current focuses is on developing immunotherapy approaches for childhood sarcoma that can be applied during surgery to prevent relapse.

Sarcomas are a group of cancers of the bone, muscle, or connective tissue. About 15% of cancers in children and adolescents are sarcomas, whereas it makes up only 1% of cancers in adults. “The biggest problem that has been facing sarcoma is that there hasn’t been a lot of progress in the last three decades,” said Joost. “Basically, we treat children with sarcoma the same as we did three decades ago.”

The relatively high incidence of the disease in children and the regularity of relapse makes the development of more effective treatments a high priority. “We really need to do better,” said Joost. “Because, at the moment, the primary treatment that we have available is surgery. With surgery, you really want to get rid of the tumour with a wide margin around it. Which, in some cases actually means amputations of limbs.”

Unfortunately, in many cases, some cancer cells will remain after surgery, which can then grow out in time and cause the cancer to come back. This means children must also go through harsh chemotherapy or radiotherapy before and after surgery. Even after all this, some children will still relapse.

“Once sarcoma returns, the prognosis becomes rather grim,” explained Joost. “One in three children will actually die from their sarcoma. So, we really have to do better.”

Currently, Joost and his team are developing a gel that can be left behind in the wound bed by the surgeon after sarcoma surgery. Children can then go home while the gel locally releases immunotherapy in the period that follows the surgery.

The aim is for the gel to attract and activate immune cells to mop up any remaining cancer cells, hopefully preventing the relapse of the sarcoma. The nature of the gel itself means that it safely degrades on its own.

This is such an exciting project and one that our Foundation is extremely proud to help fund. By continuing to fund this project, with the help of our generous community of supporters, we can see outcomes improve for so many children with sarcoma.

When you donate towards CCRF, you are helping to support world-class researchers like Joost and his team at the Telethon Kids Cancer Centre. This helps us get closer to seeing a future where children can live the cancer-free and side-effect-free lives that they deserve. If you would like to donate, simply head to our online donation page.

Images provided by Telethon Kids Institute

 

 

We're Rebranding

We’re rebranding!

We are thrilled to unveil our fresh new brand identity! Our team has thought long and hard about creating an identity that accurately depicts who we are as an organisation, landing on a brand new name and modified logo.

As our Foundation funds the vital research into all types of childhood cancers, we believe Child Cancer Research Foundation (CCRF) is a better representation of what we do. With “child cancer research” already being our website domain name for many years, it only made sense for this to be reflected in the rest of our brand. The condensed name is also less of a mouthful than the predecessor – so, you’re welcome!

Although our name has changed, our mission certainly has not. We remain committed to ensuring the ground-breaking research into childhood cancers continues, so that future generations of children can live the long and fulfilling lives they deserve.

Our new branding is simply a new trading name for our Foundation, meaning our ABN remains the same and nothing will change in terms of where your donations are going.

These changes will be effective from today, 1 July 2022. As this is quite a significant change for our team, we ask that you please bear with us as make the necessary adjustments across all our online and offline channels.

Whether you are a new or a long-time supporter of our Foundation, we would like to sincerely thank you for your support. We believe, with the help of our restored brand image, our Foundation will only continue to grow and get closer to seeing a cancer-free future for our children.

If you have any queries, please do not hesitate to contact us.

Never too little to help

Source: Serpentine Jarradale Examiner – Issue 1516 • June 30th 2022 – Page 3
Author: Chris Fowler

Photo credit: Richard Polden

A Year 3 student at Serpentine Primary proved you are “never too little to help,” last Thursday, after a hair cut in front of her entire school helped her raise more than $3000 for children with cancer.

Eight-year-old Emilia took to the stage at a special assembly, where hairdressers cut her golden locks, to be donated for use in wigs for people being treated for cancer.

Alongside the haircut, Emilia, with the help of her Mum, Cara, set up a fundraising page on Facebook, that has so far received 78 donations.

While Cara was proud of her daughter’s initiative, she never expected the bright-eyed humanitarian to raise so much in donations.

“I thought $500 would be lovely to donate – $3375 is just gob smacking,” Cara said. Emilia decided to make her fundraising drive after asking her mother about what happens to people’s hair when they receive treatment for cancer.

“She had seen a couple of friends suffering from cancer and asked me last year what happens to people that lose their hair from having cancer,” Cara said.

“I explained why and that they need to wear a wig and she decided then she would donate her hair.

“Our very close family friend is a childhood cancer survivor, so I thought what better way to support the Foundation that supports her, Children’s Leukaemia and Cancer Research Foundation.”

Emilia was also surprised by the success of her charity work, saying it made fer feel “very happy.”

Family friend Georgia Lowry was on hand to help out at Thursday’s assembly. “I was delighted to be invited to the assembly to be one of the hairdressers, I was most honoured to do that,” Ms Lowry said.

“She was pretty quiet, gorgeous little thing, she’s usually very, very outgoing, but as you would think, being centre of attention and chopping your long locks off, she was a bit nervous.

“She’s just a little legend, she’s an inspiration, to be fundraising and caring about people with cancer, she’s a little superstar,” Ms Lowry said.

Emilia, who enjoys dancing and netball and loves her new haircut, had a message for other youngsters who want to make a difference. “You are never too little to help.”

 

 

Congrats to our raffle winner!

Congratulations to our latest raffle winner who has just won $15,000! This raffle was drawn Wednesday 29 June (Permit Number: LS216367921) and we are excited to announce that the winning ticket was no. 290287.

A big thank you to everyone who supported this raffle and helped us raise funds for childhood cancer research.

We also congratulate our Ruby Club Bonus Draw winner, who has just won $1,000 cash! When you join our Ruby Club, not only do you go into the our $15,000 draw, but you are also automatically entered into exclusive monthly draws to win $1,000 cash.

Our next raffle for $15,000 will open soon, so keep an eye on our raffle page for your chance to be the next lucky winner! If you would like to join our Ruby Club to give yourself more chances to win big, sign up today.

Georgia’s a rock star

Source: Serpentine Jarradale Examiner – Issue 1516 • June 30th 2022 – Pages 1 & 3
Author: Chris Fowler

A Mundijong resident and childhood cancer survivor had her dreams realised on Wednesday, when the Childhood Leukemia and Cancer Research Foundation (CLCRF) gifted her a brand-new truck, to combine her love of hose-riding with her role as foundation ambassador.

Georgia Lowry was diagnosed with a rare and aggressive form of infantile leukemia at just eight weeks old, suffering through a punishing regimen of radiotherapy to combat the disease’s terrifying two per cent rate of survival. At six months of age, Georgia became the youngest bone marrow transplant recipient for leukemia in Australia, thanks to a donation from her sister, Grace. Following years of treatment, including periods of remission and return and a second bone marrow transplant, Georgia recovered, although she still suffers from the after-effects of her radiation treatments.

Having recently celebrated her 28th birthday, Georgia has volunteered as anambassador for CLCRF since 2012, enthusiastically giving her time to promote the foundation through public speaking and school visits. Time and energy, however, is not the only thing Georgia has contributed to cancer research. To this day, researchers around the world use Georgia’s cell lines to get a better understanding of how to treat the disease.

“We’ve got a tissue bank that we’ve been running here in WA for about 42 years and Georgia’s cell-lines are the rock stars,” CLCRF General Manager Kylie Dalton said.
“We test different drug protocols and when a research project is looking for a particular cell line, they will request those cells.”

For reasons still unknown, Georgia’s cells can be grown in the laboratory far more successfully than most. “Georgia’s cells seem to be able to do that,” Ms Dalton said. “I wish I could answer that, I really do. We just know that Georgia is a rock star in her own right.
“She’s an incredible ambassador for us and she’s the example of why research matters.
“For her to get up every single day and do what she does is incredible, if you know the journey she has gone through. She is my superhero.”
“To be able to give back to her so she can live her best life is such a thrill.”

Ever enthusiastic, and quietly humble, Georgia said that being gifted the truck hasn’t hit home yet.
“It was such a surreal day, like it was a “I was so overwhelmed by seeing the truck for the first time, I was quite a mess.
“It’s a new life for me, I’m hon oured to be able to spread the word about such an amazing foundation, it’s a family, they are so supportive and so set on making cancer history.
“I’m just really privileged to be a part of it.”

Speaking of her ‘rock star’ cell lines, Georgia is quick to acknowledge the medical researchers who use them.
“Something good has come out of something bad,” Georgia said.
“They’re still working really hard; I think they have had a few breakthroughs but they’re still consistently testing on my cells and finding new ways to eliminate cancer.
“When I was a baby, it was the radiation that did the most harm to my body, and they’ve eliminated the amount of radiation needed, using that just as a last resort instead of straight away.
“It’s truly something, and like I said I’m privileged to be a part of it. I’m just honoured.”
“I’m definitely not the worst off, there are so many people worse off than me, and to head to schools and see a smile, or have a kid ask a question, that makes my day.
“That’s what I’m there for and that’s what I love to do.

Donate to the Georgia Lowry Project today!

Over $5,000 raised at the Perth Tradie Expo!

It was great to be back at the Perth Tradie Expo over the weekend of 17-19 June. Not even the wet weather could dampen our spirits as we managed to raise $5,331.70 for childhood cancer research!

The always-popular event at Ascot Racecourse provides a once-a-year opportunity for tradies and DIY enthusiasts to purchase tools and equipment at bargain prices. To gain entry, attendees pay a small gold coin donation to charity. We were thrilled to be invited back to the Expo, collecting donations alongside the Desperate for Love Dog Pound Rescue.

This incredible result would not have been possible without our amazing volunteers who generously donated their time to collect these funds. A big thank you to Jon, Pia, Alecia, Sarah, Tayla, Keely, Gui, Eiji, Ravina, Kim, Emma, Catherine, Jacky, Andrea, Gordon, Judy, Fennis, Keely, Paul, Angus, Tegan, Logan, Curtis, Wendy, Gary, Paul and Tony!

We would also like to thank every single person who attended the Expo and decided to put their gold coin donation in our tins! Your contribution will go a long way to help future generations of children live cancer-free.

Finally, we thank Toolmart! This is always such an exciting weekend for our volunteers and staff, and we are so grateful for the great opportunity to raise funds and awareness for childhood cancer research.

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