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CLCRF funding to Dr A. Beesley

A landmark study that lifts the lid on key features of one of the most hostile cancers will soon be published with funding from the CLCRF.

One of the Foundation’s Fellowship recipients, Dr Alex Beesley with Dr Anja Stirnweiss have comprehensively described, for the first time, the genetics behind NUT Carcinoma.

NUT Carcinoma is one of the most aggressive human cancers, and there is a desperate need for effective therapies for patients with this illness. It is a rare genetically defined disease not specific to any tissue type or organ and common sites include the head and neck.

So far the cancer has been very resistant to standard chemotherapy treatments. Specialists have found that tumours may initially respond to therapy, but then rapid recurrence is experienced. Treatment must be tailored to the individual patient.

The study is a culmination of the research program that the Foundation has funded over the last several years, both in the form of project grants and Dr Beesley’s CLCRF Fellowship. This latest award of $12,000 will assist in the publication of the highly important document.

It is hoped that the manuscript will be submitted to the journal Oncotarget and it represents a milestone publication that will help inform therapy choices for this aggressive cancer.

Carter Dunn Headshave

Expressing sympathy for cancer victims and what they go through was not enough for Carter Dunn. He wanted to do more and he did: shaving his head in the name of raising money for cancer research.

It was a sudden commitment that Carter was determined to see through when he came home from school one Monday to ask his parents if he could shave his head for charity.

“One of Carter’s friends had a family member who was battling leukaemia and he just came home and said he felt like he wanted to show his support and asked if he could shave off his hair,” Jacqueline Dunn explained.

“Carter literally decided on the Monday that he was going to do it on the Friday of the same week, so we set up his fundraising account and shared it via social media.”

When Friday came, a small amount of nerves kicked in, but Carter had no doubt that he was going to do it. He had the full support of his school friends who still couldn’t quite believe he was going through with it.

Once all his hair was reduced to tiny stubble his first reaction was – “Wow, it’s cold!” Then Carter smiled and said he was proud of himself, as were all his friends who cheered him on.

For Carter’s parents it was one of many proud parent moments they have had, acknowledging that he never hesitates to think of others despite his own personal trials. Carter recently had to undergo surgery to remove his gallbladder.

“We felt mega proud that Carter who has his own personal battles daily, just felt the need to do something for others, acted on it and followed through,” Jacqueline said.

Within five days Carter exceeded the target of $250 that he hoped to raise, instead he reached $440. He has no hesitation in repeating the shave once he has regrown his hair.

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.

Charity Golf Day Royal Perth Golf Club

They may be more accustomed to green turf and and getting out of sand traps, but representatives from Royal Perth Golf Club embraced the chance to step into scientific surrounds on a visit to the CLCRF Research Lab.

Under the wing of tour guide Professor Ursula Kees, the golfers learned about very different challenges the researchers came up against each day as they strive to find answers to how they can help children with cancer.

It was an eye opening visit to see just what is taking place in the lab funded by CLCRF. They witnessed where and how the ‘cell lines’ taken from tumours of infants who are fighting or have survived cancer are being used to develop more effective treatment protocols for children around the world.

It was an ‘ace’ shot for the Foundation to make a great impression on the captivated audience. CLCRF has now been chosen as the 2017 beneficiary of the Royal Perth Golf Club’s annual charity day.

Thank you to the Royal Perth Golf Club for their generous support. Further details about the day will follow.

Landsdale forum news

It has been seven years of fabulous support from Landsdale Forum News and their customers. What began in 2010 has in total amounted to $10,917 donated to the CLCRF to fund childhood cancer research.

As they sadly have to close their doors we at the CLCRF want to wish owner, Paul Slattery, all the best for his future endeavours as he has played a big part in what CLCRF has been able to achieve under the Lansdale Forum News banner.

A huge THANK YOU to Paul and Landsdale Forum News for their incredible support towards child cancer research over the years as a valued member of the Foundation.

2017 family night out gets pinked

Families and friends came together again to rock out under the stars to the sound of PINKED at this year’s Family Night Out Concert held at the Perth Zoo.

It was a popular way for parents to have their kids entertained on March 18 as families gained entry to explore the zoo ahead of the concert kicking off as the sun set. It was a fantastic show – thanks to Samantha and her band and dancers.

We could just imagine the animals having a dance along in their enclosures! But it wasn’t just covers of Pink’s greatest hits and an abundance of animals for people to enjoy. There was so much more.

The entertainment rolled out all evening as Mal and Judi, from Awesome Balloon Creations joined us again to help keep the children (and adults) occupied with temporary tattoos and an amazing bubble machine. For the budding artists in the crowd, Sony Productions supplied an array of colouring-in sheets to keep them busy, and prizes for people to walk away with.

If you were lucky enough, you were picked out from the crowd with family passes to the latest Smurf movie. We hope the winning families enjoyed the movie.

While rain did threaten to dampen the vibes for the evening it held off for the night, which was greatly appreciated by the event organisers. Just when an injection of energy was needed, a gourmet barbecue was served up by Mustard Catering. It was a perfect evening, and great fun was had by everyone.

Events like these don’t happen without volunteers, so a BIG thank you to:

• Kristy, Jonelle & Chris Carlsson
• Georgia Lowry
• Michele & Pat Seymour
• Kylie Dalton and her staff from Absolute Edge Media
• Gary Kearns
• Sarah Felmingham

The date for our 2018 Family Concert is yet to be confirmed, however keep your eyes peeled because it will be an event you don’t want to miss!

You can sign up for our E-News by sending us your email address, like us on Facebook or add www.childcancerresearch.com.au to your favourites list online so you can keep an eye out for any upcoming events.

CBA thanks CLCRF treasurer

Congratulations to our wonderful Treasurer, Kim Williamson, who was awarded a Certificate of Appreciation from the Commonwealth Bank of Australia in 2016.

Kim has been the Secretary of the Foundation since its inception 30 years ago and Treasurer since late 2002. Prior to this he was the Administrator of the former Princess Margaret Children’s Medical Research Foundation (Inc.)

This is a well-deserved recognition of Kim’s long and dedicated service to the CLCRF.

Raffle Winner Announced

Our ‘Lucky Numbers’ Raffle #41 (Permit No LS209320816) was drawn on this afternoon. Winning ticket No 28765. The winner has been notified.

Congratulations to our lucky Winner – you have won $20,000 CASH!

Our next raffle commences on the 18/02/17 – if you would like to purchase tickets – please ring our Raffle Hotline 1300 139 651. Thanks to all who supported this raffle and helped raise money for a good cause.

 

Wellard legacy

The Children’s Leukaemia & Cancer Research Foundation (Inc.) has been incredibly fortunate to be a long-time beneficiary of the Wellard Group. Through this long-standing relationship, they have become a vital part of the CLCRF family and this relationship continues to strengthen.

In December last year, the Foundation’s Chairman, Geoff Cattach and Executive Officer, Andrea Alexander (pictured with husband Gordon in photo above), were invited to the Wellard annual Christmas party at Fraser’s Restaurant to celebrate another year of working together to make a difference for children with leukaemia.

Wellard Group is one of Australia’s largest producers and distributors of livestock and grain. They use their capabilities and relationships to raise funds to contribute to foundations like CLCRF.

Early in January 2017, Wellard Group continued to support the Foundation by presenting a donation of $25,000. CLCRF are truly indebted to the amazing support from Wellard and its management.

Zaivier’s big hair chop

Zavier’s mission was to share his hair with those without it. When his plans hit a hurdle he was undeterred, he simply changed tact to lead him from a big chop to a great shave.

It was back in 2015 that Zavier originally decided he wanted to grow his hair to donate it to a foundation that made wigs for kids with Leukaemia. He was inspired by a mate who had done just that.

“I realised that kids with leukaemia don’t get to go home every night like I do, they don’t get to wake up in their own bed in the morning, they don’t get to go school or the park to play like I get too. A lot of them spend so much time in hospital that the hospital is their home,” Zavier explained.

“So I figured by donating my hair, wigs could be made for those kids, so that when they do get to go out they have a wig to wear and people don’t stare at them because they look different.”

For human hair to be used for a wig it is required to be at least 35cms in length. Unfortunately, Zavier’s ambition to reach the length he needed would literally be cut short. At 11 years old he was about to start high school, his hair was 20 cm long: too long for high school regulations and too short to be used to make a wig.

Disappointed, he had to trim his locks before he could donate them.

Zavier realised he could still make a difference. Instead of cutting his hair, he could shave his whole head and raise money for the Children’s Leukaemia & Cancer Research Foundation.

In the end, Zavier raised more than $880 to contribute towards vital research to help kids with leukaemia. Thank you Zavier for your determination to help kids with Leukaemia!

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