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Annual Report 2017

ANNUAL REPORT 2017 3THE KIDS’ CANCER PROJECT2

To support bold scientific research that has the greatest chance of clinical success in the improvement of treatments of childhood cancers.

A word from our founder

At The Kids’ Cancer Project we are proud and grateful to have Vice Regal Patronage of His Excellency General The Honourable David Hurley AC DSC (Ret’d), Governor of NSW. On 2 September 2016, His Excellency and Mrs Hurley warmly invited us into their beautiful home at Government House, Sydney to mark the beginning of Childhood Cancer Awareness Month. I was so moved as Mrs Hurley lead our small group in a few choruses of You Are My Sunshine. As we sang I reflected on all the beautiful rays of sunshine I’ve had the pleasure to meet. A great number who are sadly no longer with us, but thanks to scientific breakthroughs so many more are. Some of those children are now the biggest advocates, raising awareness and funds for scientific research. Like young ambassadors Deni and Alex who helped promote our 2016 Spring Appeal. Both these inspiring teenagers are determined to live positive, healthy lives while managing the late effects of their treatment. In fact, Deni joined our marketing team for a one-month internship, and Alex led the charge for our Youth4Youth Challenge held on 11 September. Kids of all ages walked 20km through bushland in Ku-ring-gai National Park, NSW and raised over $10,000. Also in September, seven-year-old Declan from WA rode 600km on a motorised scooter along with his parents Kim and Simon, and brothers Brodie and Kieran. They wore superhero costumes the whole way raising over $50,000 for childhood cancer research. Sadly, in May 2017, Declan died from the neuroblastoma he’d battled for four years. A true superhero.

Then there’s five-year-old Grace from WA. This brave little lady was (and still is) being treated for acute lymphocytic leukaemia, yet she participated in a local fun run and raised more than $5,000 for the ‘sick kids’. And so many other children, too many to list here, took it upon themselves to step up and do something for others. Let me tell you, it’s great to see adults coming together to raise funds for research, but there is something profoundly touching and inspirational to see kids helping other kids. Together, we are all working to find better treatments and a cure for this devastating disease. I want to personally thank our dedicated staff along with the many volunteers who work collaboratively with compassion to ensure the ongoing development and success of The Kids’ Cancer Project. And thanks also go to all the fundraisers, donors, corporate partners and supporters for choosing to help kids with cancer in the most meaningful way of all.

Col Reynolds OAM Founder and Director

One hundred per cent survival for children with cancer while eradicating the harmful impacts treatment can bring.

Dulcie, five-years-old. Diagnosed with Wilms tumour at age three.

Compassion. Our empathy with the plight of children with cancer drives us to apply our individual and collective efforts to improving survival and eliminate suffering.

Unrelenting. Like our founder, we never give up. In all that we do we go beyond what is required to raise awareness and funds for research which will improve the quality of life of kids with cancer.

Respect. We listen, understand, collaborate and act on the trust the community gives us. We respect the contributions of all members of The Kids’ Cancer Project family.

Excellence. We have an unwavering commitment to excellence by funding only the best scientific research. We work collaboratively with others to ensure the successful awareness and promotion of the science that is making a difference.

WelcomeMission

Values

Vision

This past financial year gave me so many wonderful opportunities to meet outstanding people in our community.


I’m excited by the number of research studies The Kids’ Cancer Project were able to fund during FY2017, and we are so grateful for the professional advice and guidance offered by our Research Advisory Committee.

I also express gratitude to my fellow Board Members whose service is invaluable. It is with sadness that I announce three of our number finish their term this year; Fran McPherson, Caroline Pierce and Ken Moroney AO APM. I welcome Doug Cunningham and Debra Singh to our Board and we look forward to their contribution.

Nothing we’ve accomplished would be possible without the help of all our donors and supporters, and I thank you wholeheartedly.

Adrian FiskChair of the Board

The past financial year represented successful strategic consolidation for The Kids’ Cancer Project.

Our three-year business plan maps a path for The Kids’ Cancer Project to build on its strong track record of supporting the boldest scientific research. We set a lofty goal to fund $13M in research projects between 2016 and 2018. Being able to invest $3.6M across 27 studies in FY2017 put that target clearly in our sights. The past 12 months were characterised by careful planning including review of systems and processes along with creative thinking to ensure the cause has a strong voice in the community.

Our bear and raffle programs have long been a reliable source of income going towards childhood cancer research. Due to their lower fundraising margin we reviewed processes and forged new partnerships ensuring more dollars help kids with cancer.

Building financial capacity to fund research and deliver on our purpose were the hallmarks of FY2017.

The Board’s focus has been on creating plans for revenue growth through high-yield lower-cost alternatives for our donors.

By improving the fundraising model of the charity to be more diverse, efficient and sustainable, we open up greater opportunities for supporter engagement. The benefit will be the ability to grow the level of research, including investing in new research opportunities.

Already we’re seeing positive outcomes of strategies to improve website functionality, develop lead generation campaigns, reactivate lapsed supporters and through the creation of a clear brand message.

Throughout the year our spirit of collaboration continued with existing corporate partners while new relationships were shaped. Coordinated efforts to fund research were maintained with Cancer Australia in the Priority Driven Collaborative Cancer Research Scheme along with the Australian and New Zealand Children’s Haematology Group.

Baxter, now 3 years, diagnosed with acute myeloid leukaemia at just 6 weeks of age, with his mum Emma.

From our Chair

From our CEO

Welcome

We believe the only way to improve outcomes for kids with cancer is through advances in medical research.

Science

SolutionsOur research priorities reflect our focus on finding better treatments, building research capabilities and supporting survivorship programs.

SurvivalOur founder, Col Reynolds OAM, made a promise to never give up until a cure is found. That is our ultimate aim.

Throughout the financial year we continued to run and support a diversified fundraising mix (see page 22) while introducing new programs such as Project Cure which was launched in December to both acknowledge our regular givers and encourage more of them.

I wish to express my thanks to the Board, all of whom generously volunteer their time to provide guidance and expertise. And my heartfelt thanks goes to all our passionate donors, fundraisers, volunteers and staff who give me great confidence in being able to achieve our goals over the next three years.

Owen Finegan Chief Executive Officer


Meet our Board

Youth4Youth

Our Board of Directors is responsible for The Kids’ Cancer Project overall performance and compliance, providing strategic direction, effective governance and leadership.

Nigel Everard CPA, BCom, Grad Cert (Mgmt), MBA (Deputy Chair) Nigel is Chief Financial Officer of a leading Australian quick service restaurant business. Throughout his 20-year career, he has held senior positions in general management, finance, strategy and business improvement. Nigel has been deployed in Asia and Europe working in various industries including automotive, aviation and the not-for-profit sector.

Col Reynolds OAM Founder Cols’ contribution to the lives of children with cancer was officially recognised with an Order of Australia in 2000. Before founding the charity, Col was a tourist coach driver. He dedicated 30 years of his life to his profession, during which time he looked after many high profile clients including US Secret Service agents and members of the Papal visit of Pope John Paul II.

Simmone ReynoldsBCom Simmone is a founding member of The Kids’ Cancer Project Board and is currently employed with the Australian Defence Force as a Communications Officer. Earlier in her career, Simmone spent nine years working in the fast moving consumer goods sector holding positions in marketing, national account management and category development for blue chip multinationals Unilever Australasia and Nestlé.

Caroline PierceCaroline has more than two decades’ experience in publishing, journalism, digital media and knowledge management. Her current role is as Company Secretary of a privately owned consultancy specialising in workflow applications and web enablement for local government. Her responsibilities cover business process analysis, application development, marketing and administration.

Richard CaldowBCom (Finance and Accounting) Richard has worked as a stockbroker, corporate finance and funds management advisor since 1992. Prior to this he worked in chartered accounting with roles at Ernst & Young and Arthur Andersen. Richard’s son Archie was diagnosed with high-risk neuroblastoma at just three years of age. Archie is now living with cancer and attending primary school.

Fran McPherson PSMAs the Executive Director for People and Corporate Services at Transport for NSW, Fran was responsible for driving strategic development and implementation of HR and business services across five branches of the department. In 2007 Fran was awarded a Public Service Medal for delivering significant improvements to several public sector agencies.

Sue Anderson BBus, EBMA Sue is Co-Founder and Director of Retail Capabilities. Her specialty lies in designing service experience and innovation practices to support major property groups and retailers here in Australia as well as offshore. Sue discovered the importance of research into childhood cancer when her daughter Audrey was diagnosed with an inoperable brain tumour at age five. Audrey is now a confident ‘tween who loves school.

Lyndall Stoyles Lyndall holds the position of Executive General Manager, Legal and Corporate Affairs for Caltex Australia Limited. Prior to this, she was Group General Counsel and Company Secretary for a logistics firm. She also spent more than a decade with Clayton Utz advising on competition, commercial and corporate law issues across a broad range of industries.

Mr Ken Moroney AO APM (Past Chair) Ken served as a member of the NSW Police Force for 42 years. During his distinguished service, he occupied a number of high profile positions including Commissioner of Police (2002-2007). In 2006, Ken was awarded the Order of Australia and has received numerous medals such as the Australian Police Medal and the National Medal.

Adrian FiskACA, MEcon (Chair) Adrian is a partner at KPMG. He has extensive experience in the professional and financial services industries working with some of the largest companies on the ASX. Adrian is a member of the Institute of Chartered Accountants. He became involved with The Kids’ Cancer Project after his son Aiden was diagnosed with a brain tumour at age five. Aiden is now a happy sixth-grader.

Welcome

In September 2016, childhood cancer survivor Alex La Rossa led the Youth4Youth Challenge in Ku-ring-gai National Park, NSW. That same month he and fellow survivor Deni Atkinson were part of our fundraising efforts, highlighting the myriad challenges of living with the late effects of childhood cancer.

Funding

“In my role I see children suffering and I want to help them immediately.

At the same time, I’m all too aware of the significant amount of time it takes to ensure

new therapies are completely safe.”Associate Professor David Ziegler

Chair of The Kids’ Cancer Project Research Advisory Committee,Children’s Cancer Institute

Associate Professor David Ziegler, Chair of the Research Advisory Committee with Col Reynolds, Founder and Director.


Our funding priorities

At the start of the calendar year, The Kids’ Cancer Project invite applications for research grants. Submissions detail the aim of the planned study specifying how it will assist in finding cures for childhood cancer. Plans, key performance indicators and milestones are also provided.

An expert Research Advisory Committee (RAC) made up of leading clinicians and researchers from both Australia and abroad, independently review all submissions in May and score them against nine key requirements.

The RAC present their recommendations to The Kids’ Cancer Project Board who make the final decision on which studies are to be funded each financial year.

The dedicated professionals who make up the childhood cancer research fraternity are a small and very specialised group. As a result, members of The Kids’ Cancer Project RAC often seek funding from the organisation. The rules of the peer review process strictly state that RAC members cannot review and make recommendations on their own projects.

The Kids’ Cancer Project supports bold scientific research that has the greatest chance of clinical success. A thorough peer review process is undertaken to ensure the best studies are funded.

Associate Professor David Ziegler MBBS UNSW, MD/PhD UNSW, Dip Paed, FRACP (Chair) Associate Professor Ziegler is a senior Staff Specialist in the Kids Cancer Centre at Sydney Children’s Hospital, Randwick. He is a paediatric oncologist with expertise in neuro-oncology and early phase clinical trials. He has concurrent appointments as Group Leader at the Children’s Cancer Institute, and conjoint Associate Professor at the University of New South Wales.

Professor Jonathan G Izant PhD Professor Izant has extensive international experience in biomedical research, business and non-profit leadership at Yale School of Medicine, Garvan Institute, QUT, Johnson & Johnson and the Bill & Melinda Gates Foundation. He has helped create biotech, bioinformatics and business development companies, was a member of the NHMRC Human Gene Advisory Panel and has served on numerous government and private research funding committees.

Dr Justine Stehn PhDDr Stehn is a Research Strategy Manager for SFI Research. She has over 20 years of field experience in understanding the role of the cell cytoskeleton in disease. She also has more than three years’ industry experience overseeing the clinical development of a novel drug technology for the treatment of adult and childhood cancers.

Dr Andrew Moore MBBS, FRACP, PhDDr Moore is a Paediatric Oncologist at the Lady Cilento Children's Hospital and Group Leader of the Childhood Leukaemia Research Laboratory at the University of Queensland Diamantina Institute, located within the Translational Research Institute (TRI). He is also Director of the Queensland Children's Tumour Bank, which collaborates with multiple cancer research groups nationally and internationally.

Professor Murray Norris AM BSc ANU, MAppSc NSWIT, PhD UNSW Professor Norris was one of the first three scientists to staff the Children’s Cancer Institute when its research laboratories opened in 1984. He is Head of the Molecular Diagnostics Program and was appointed Deputy Director of Children’s Cancer Institute in 2000. He is also inaugural Director of the UNSW Centre for Childhood Cancer Research.

Dr Timothy P Cripe MD, PhDDr Cripe is a paediatric expert at Nationwide Children’s Hospital in Columbus, Ohio. His clinical interests include gene and viral therapies for solid tumours in children, including brain tumours, neuroblastoma, and bone and soft tissue sarcomas. Dr Cripe’s research focuses on developing and testing new, targeted therapies for paediatric solid tumours and translating those findings into clinical studies.

Dr Brenda Weigel MD, MScDr Weigel is Director of the Division of Pediatric Haematology/Oncology at Masonic Cancer Centre, University of Minnesota (U of M). She is a professor cross-appointed at U of M’s Cancer Centre and the Department of Pediatrics, and the recipient of the Lehman/Children’s Cancer Research Fund Endowed Chair in Pediatric Cancer. She is also Chair of Developmental Therapeutics for the Children’s Oncology Group.

Research Advisory Committee Members

Process

Improving survival and treatments

Late effects and quality of life

Future proofing childhood

cancer research by improving

capabilities and encouraging collaboration

Understanding childhood cancer and the causes

Adolescents and young adults

Equal access to care

Our research priorities

direct where funds go.

FundingRecipients of research funding through The Kids’ Cancer Project, Professor Brandon Wainwright and colleague Amanda Millar at The Institute of Molecular Bioscience, Queensland.


Funding of our research priorities

Funding by cancer type

Bone cancer 1 project

All cancers 3 projects

Brain cancer 7 projects

Blood cancer 7 projects

Solid tumours 9 projects

organisations

We funded projects in the largest institutes and hospitals dedicated to childhood cancer research in Australia.

• Drug discovery project• Reversing glucocorticoid resistance in paediatric acute lymphoblastic leukaemia• Stathmin regulation of microRNA expression in neuroblastoma cells• Novel therapies for diffuse intrinsic pontine glioma • International difluromethylornithine (DFMO) clinical trial• Synthetic retinoid therapy for diffuse intrinsic pontine gliomas• Personalised Medicine: Zero Childhood Cancer• Pre-clinical development of novel immune therapy for paediatric cancers• Development of CAR T cell immunotherapies for paediatric patients • Personalised disease monitoring in childhood acute myeloid leukaemia • Developing novel immunotherapies for childhood blood cancers• Novel targets to treat medulloblastoma• New therapeutic targets for paediatric medulloblastoma• Development of personalised medicine approaches to treat medulloblastoma• Therapeutic targeting transcriptional addiction in paediatric leukaemia• Exploring better and safer treatments for osteosarcoma• Treatment of solid paediatric cancers with tropomyosin targeted therapy• Improving chemotherapy regimens for medulloblastoma• Improving the cure rates of childhood brain cancer• Improving treatments for infant acute lymphoblastic leukaemia

Future proofing childhood

cancer research by improving

capabilities and encouraging collaboration

• Re-engage• Ready, Steady, School

• Investigating drug resistance and genetic changes in Ph-like ALL in adolescents

• Bio-banking and personalised medicine software platform• Tumour Bank at The Children’s Hospital Westmead• Clinical trials support and establishment of a national network of tumour banks• National Tumour Biobanking Network

Late effectsand

quality of life

Adolescents and

young adults

Improving survival and treatments

Total research funded

in FY2017

$3.64million2%

12%

7%

79%

UNSW AustraliaChildren’s Cancer InstituteThe Children’s Hospital at WestmeadUniversity of Queensland Diamantina InstituteThe Institute of Molecular Bioscience (IMB)QIMR Berghofer Medical Research InstitutePeter MacCallum Cancer Centre

La Trobe UniversityNationwide Children’s Hospital, OhioTelethon Kids InstituteSydney Children’s Hospital, RandwickKids Cancer AllianceANZCHOGSouth Australian Health & Medical Research Institute

a.

a.

b.

b.

d.

d. e.

e.

c. c.

2714

Funding

projects across


Developing novel immunotherapies for childhood blood cancers Institute: University of Queensland Diamantina Institute Recipient: Dr Andrew Moore Improved survival rates for childhood blood cancers in recent decades have largely been due to more intensive use of conventional chemotherapy. This is unfortunately associated with a range of acute and chronic health problems. New treatments which utilize the patient’s immune system are desperately needed and hold promise of improving survival while reducing toxicity. Dr Moore and his team are developing novel approaches using genetically-engineered mice that will mirror the biological response of humans to blood cancer immunotherapy. This project is supported by Perpetual Foundation.

New therapeutic targets for paediatric medulloblastoma Institute: QIMR Berghofer Medical Research Institute Recipient: Dr Bryan Day Dr Day is investigating the role of a group of proteins in paediatric medulloblastoma known as Eph receptors. These proteins aren’t usually present in normal healthy tissue but are found in a number of cancers, including adult brain cancer where they have been shown to contribute to aggressiveness. This project aims to determine what function Eph receptors play in medulloblastoma cells and whether they can be used as new therapeutic targets. This project was supported in 2015 to 2017 as part of the Cancer Australia Priority-driven Collaborative Cancer Research Scheme.

Development of personalised medicine approaches to treat medulloblastoma Institute: QIMR Berghofer Medical Research Institute Recipient: Dr Bryan Day Current medulloblastoma diagnosis is unable to fully recognize the molecular diversity of individual cells, nor can it provide information to guide appropriate treatment plans. The project aims to distinguish tumour cells that survive standard therapies from those that are sensitive. The results will allow researchers to identify patients who do not need aggressive treatments that cause chronic medical issues and to design and test therapies that could prolong patient survival.

Investigating drug resistance and genetic changes in Ph-like ALL in adolescents Institute: South Australian Health & Medical Research Institute Recipient: Dr Susan HeatleyResearch carried out by Dr Heatley has shown a substantial proportion of treatment failures in acute lymphoblastic leukaemia (ALL) patients are attributable to specific mutations, referred to as Ph-like ALL subtype, which are prevalent among adolescents. Through better understanding of what drives the disease at a genetic level, researchers will be able to establish effective treatment options with a personalised medicine approach.

Exploring better and safer treatments for osteosarcoma Institute: La Trobe University Recipient: Associate Professor Christine HawkinsAround 23 young Australians are diagnosed annually with the bone cancer osteosarcoma. This project will investigate the efficacy of IAP antagonists. These new anticancer drugs inactivate a group of proteins present in particularly high levels within osteosarcoma cells and facilitate the survival, growth and spread of these cancer cells. Researchers in the Hawkins group will also explore the possibility that IAP antagonists may reduce the risk of therapy-related cancers arising in cured patients.

Re-engageInstitute: UNSW Australia Recipient: Professor Claire WakefieldOver 90 per cent of children who survive cancer will develop at least one serious illness due to treatments administered to their growing bodies. Re-engage aims to make sure these survivors receive the best possible care after cancer, by improving their knowledge about late effects and engagement with recommended medical follow-up. This innovative program utilises state of the art e-technology to alleviate the disadvantages of geography while empowering survivors as they transition through care settings.

Novel targets to treat medulloblastoma Institute: The Institute of Molecular Bioscience (IMB) Recipient: Professor Brandon WainwrightBrain tumours are the most common cause of cancer-related death in children. Research carried out in the Wainwright laboratory has identified proteins that do not function appropriately in medulloblastoma (a tumour of the cerebellum) could be exploited to kill the tumour. This project will test an already approved drug that targets these defective proteins together with standard chemotherapy. It has the potential to be rapidly implemented in the clinic if successful.

Personalised disease monitoring in childhood AML Institute: University of Queensland Diamantina Institute Recipient: Dr Andrew MooreAcute myeloid leukaemia (AML) is an aggressive leukaemia with a very poor prognosis for relapsed patients. This research will develop new ways of monitoring the response to therapy, detect impending relapse, and identify specific markers associated with relapse in AML patients. The insights gained from this research will inform future studies aimed at developing new therapies to prevent relapse and to treat patients who are not cured by currently available treatments.

Projects funded“More research is urgently needed into this devastating disease. The Kids’ Cancer Project is helping researchers like me to work towards better treatment options for children with brain cancer.”Dr Bryan Day QIMR Berghofer Medical Research Institute

During FY2017, The Kids’ Cancer Project funded 27 research studies around the country. Many were characterised by courageous new thinking on how to overcome this indiscriminate disease.

new projectsfunded in FY2017

Funding

Dr Bryan Day in the lab at QIMR Berghofer Medical Research Institute, Queensland.


Therapeutic targeting transcriptional addiction in paediatric leukaemia Institute: Peter MacCallum Cancer Centre Recipient: Professor Ricky JohnstoneThis project looks at a set of genetic changes specific to low prognosis leukaemia patients that may be exploited to improve treatment. These genetic changes drive cancer progression and therefore promote resistance to current therapy. However, thanks to advances in research,it’s now possible to target these genes and turn the cancer’s strength into weakness. By developing novel, more specific therapies, it will be possible to improve chances of survival for children with low prognosis leukaemias.

Synthetic retinoid therapy for diffuse intrinsic pontine gliomas (DIPG) Institute: Children’s Cancer Institute Recipient: Associate Professor David Ziegler DIPG is a malignant brain tumour occurring almost exclusively during childhood. There are currently no effective treatment options. At its completion, this project aims to produce the data required for a clinical trial of fenretinide combination therapy in DIPG. Fenretinide is a synthetic drug related to vitamin A which is clinically available and has a well-established safety profile.Funding partner: Cancer Australia and Cancer Council NSW, Cancer Australia Priority-driven Collaborative Cancer Research Scheme.

Reversing glucocorticoid resistance in paediatric ALL – a novel epigenetic Institute: Children’s Cancer Institute Recipient: Professor Richard Lock Glucocorticoids, a class of steroid hormones that can stop inflammation, are among the most effective drugs used in the treatment of childhood acute lymphoblastic leukaemia (ALL). However, the emergence of resistance is a significant barrier to cure. This project will further improve understanding of glucocorticoid resistance mechanisms and facilitate the development of more effective treatments for children with ALL.Funding partner: Cancer Australia and Cancer Australia Priority-driven Collaborative Cancer Research Scheme.

Improving chemotherapy regimens for medulloblastoma Institute: Telethon Kids Institute Recipient: Dr Nick GottardoThe Gottardo team, including Dr Raelene Endersby and Prof Terry Johns, have evidence that two drugs, iCHK and iATR, can improve radiation therapy by stopping DNA repair. The results of this project will reveal the appropriateness of these drugs for children with medulloblastoma, and if they improve radiation therapy. Moving forward this will inform the design of new clinical trials, and help achieve our aim of better quality of life for patients.

Improving the cure rates of childhood brain cancer Institute: Telethon Kids Institute Recipient: Dr Nick GottardoMedulloblastoma is the most common childhood brain cancer and although survival rate is more than 70 per cent, the life-long toxic effects of therapy are unacceptable. This project aims to make current chemotherapy protocols more effective with the ultimate goal of relying less on radiotherapy, because radiation can result in a number of long-term negative side effects in survivors. Funding partner: Cancer Australia and Cure Cancer Australia Foundation, Cancer Australia Priority-driven Collaborative Cancer Research Scheme.

Ready, Steady, School Institute: UNSW Australia Recipient: Dr Joanna Fardell Children and adolescents often have a strong desire to return to school shortly after intensive treatment. However, along with fatigue and problems with concentration and attention, a lack of support and understanding from teachers can be a key barrier to successful school reintegration. The Ready, Steady, School Program aims to help young cancer survivors return to school by giving parents, students and education professionals access to reliable information and resources. Funding partner: This project is supported by FDC Construction and Fitout.

“We are grateful that The Kids’ Cancer Project is enabling us to progress our exciting results identifying novel anti-cancer drugs to treat a highly aggressive cancer afflicting infants. The funding will ultimately allow us to rigorously test these drugs so the best possible treatments reach the clinic and improve the outcomes of our very young patients with leukaemia.”Telethon Kids Institute

“Cancer takes away children at the dawn of their lives.” Dr Nick Gottardo

Pre-clinical development of novel immune therapy for paediatric cancers Institute: Children’s Cancer Institute Recipient: Dr Alla Dolnikov Immunotherapy is a rapidly emerging practice that harnesses the power of the immune system to combat cancer. However, for a variety of reasons, only a proportion of patients achieve durable results. The goal of this project is to investigate a novel treatment that will overcome current limitations of immune cellular therapy to achieve long-lasting results and avoid relapse. If successful, the results of this research will form the foundation for a clinical trial.

Stathmin regulation of microRNA expression in neuroblastoma cells Institute: Children’s Cancer Institute Recipient: Professor Maria Kavallaris Neuroblastoma, the most common solid tumour of young children, frequently presents with aggressive metastatic disease and for these children the 5-year survival rates are dismal. Recently, research by the Kavallaris’ group and funded by The Kids’ Cancer Project has shown that a protein called stathmin mediates neuroblastoma metastasis. Thanks to continued funding, the project will focus on understanding the role that specific DNA sequences play in regulating metastasis and potentially develop new targeted therapies.

Novel therapies for diffuse intrinsic pontine glioma (DIPG) Institute: Children’s Cancer Institute Recipient: Associate Professor David Ziegler With very few treatment options and no cure, the only way to help children with DIPG is through research. This project headed by A/Prof Ziegler, focuses on the development of a new drug (TRX-E-009) that can target DIPG cells specifically, causing them to die. Ultimately, this novel project aims to gather the necessary pre-clinical data required to progress to human trials.

Drug discovery project Institute: UNSW Australia Recipient: Professor Peter Gunning The architecture of a cancer cell has long been a target of scientists seeking new cancer treatments. However, because the building blocks of a cancer cell mirror those of the heart and muscles, all attempts to target cancer cells in this way have previously failed. Led by Prof Gunning, the UNSW research team have discovered a new class of drugs called anti-tropomyosins (ATMs), that force a cancer cell to self-destruct without impacting any of the healthy cells around it.

FundingDrs Raelene Endersby and Nick Gottardo at Telethon Kids Institute,Western Australia.


“Childhood cancer survivors are at risk of premature mortality and adverse health conditions as they progress to adulthood.” Professor Claire Wakefield Re-engage Program, UNSW

Development of CAR T cell immunotherapies for paediatric patients Institute: The Children’s Hospital at Westmead Recipient: Dr Belinda Kramer and Dr Geoff McCowageThis project aims to develop an immunotherapy treatment for children with relapsed or refractory solid tumours, focussing on osteosarcoma, Ewing’s sarcoma, brain tumours and neuroblastoma. The study involves genetic modification of T cells with a chimeric antigen receptor (CAR) to target tumour associated proteins present on these paediatric solid tumours. The long-term goal of the program is to have CAR T cell therapies available to patients at an earlier stage of treatment, rather than as an experimental option following treatment failure.

Clinical trials support and establishment of a national network of tumour banks Recipient: Australian and New Zealand Children’s Haematology / Oncology Group (ANZCHOG) ANZCHOG is the professional organisation representing specialists and other healthcare professionals caring for children and adolescents with cancer. Their goal is to improve outcomes by facilitating access to cutting-edge clinical trials and promoting other quality research. Through The Kids’ Cancer Project support, ANZCHOG will open new international clinical trials in Australia, facilitate the development of a national network of tumour banks, and coordinate standardised collection of important paediatric cancer data at Australian children’s cancer centres.

National Tumour Biobanking Network Recipient: Australian and New Zealand Children’s Haematology / Oncology Group (ANZCHOG) This project represents a formal collaboration between nine biobanks and their associated institutions, and includes representatives from all major treatment centres in Australia and New Zealand. This project will lead to standardised collection and storage of tumour samples and clinical data linkage across all Australian and New Zealand paediatric centres, and build processes to enhance the ease of access to tumour samples.

International DFMO clinical trial Institute: Children’s Cancer Institute Recipient: Associate Professor David Ziegler Phase 1 of this clinical trial involves children with relapsed high-risk neuroblastoma. Currently, these patients have less than 20 per cent chance of survival. The trial, running across 16 hospitals in Australia and the USA, offers a new treatment approach with difluoromethylornithine (DFMO) which is safely used to treat other diseases. This study aims to establish the maximum tolerated dose of DFMO in combination with other drugs and will lead the way to the development of more effective treatments.

Improving treatments for infant acute lymphoblastic leukaemia (ALL) Institute: Telethon Kids Institute Recipient: Professor Ursula Kees Current treatment for paediatric ALL can include a combination of as many as ten drugs and several treatment phases to attain complete and continued remission. Despite this, infants diagnosed during early-life (aged less than 3 months) face a survival rate of only 30 per cent. This project has identified and will further characterise the effectiveness FDA-approved drugs currently not used to treat infants with leukaemia. The findings from this research can be implemented into the design of future clinical trials.

Tumour Bank Institute: The Children’s Hospital at Westmead (CHW) Recipient: Associate Professor Daniel Catchpoole The Tumour Bank at CHW has received an increasing number of requests to provide support services to research studies since opening its doors in 1993. The Kids’ Cancer Project funding has led to the employment of specialist staff who are accelerating the progress of over 100 projects globally. The work of the Tumour Bank means that leading international researchers are making big discoveries that have advanced our understanding of childhood cancer and its treatment.

Biobanking and personalised medicine software platform Institute: Kids Cancer Alliance Recipient: Prof Glenn Marshall and Prof Jennifer Byrne This new computer software will enable a single combined database to be shared between the tumour banks at the Children’s Cancer Institute and the Kids Research Institute within The Children’s Hospital at Westmead. The database will allow tumour bank staff to manage sample information more efficiently and to better advise prospective researchers about sample availability.

Treatment of solid paediatric cancers with tropomyosin targeted therapy Institute: Nationwide Children’s Hospital, Ohio, USA Recipient: Professor Timothy Cripe Pre-clinical studies have focussed on testing the anti-tumour activity of anti-tropomyosin compounds. The findings from Professor Cripe’s research provide critical information on this class of drugs, importantly as they confirm for the first time that ATMs can enhance the efficacy of standard-of-care chemotherapy used to treat paediatric neuroblastoma, resulting in a significant reduction of tumour growth and proliferation.

Personalised Medicine: Zero Childhood Cancer Institute: Children’s Cancer Institute Recipient: Professor Michelle Haber Zero Childhood Cancer, a joint initiative of Children’s Cancer Institute and Kids Cancer Centre, Sydney Children’s Hospital, Randwick, is the most exciting childhood cancer research initiative ever undertaken in Australia. It aims to leverage and optimise the most innovative research and technology to more precisely analyse the molecular and biological profile of individual children’s cancer. This will enable identification of potential drugs that will give each child the best chance of survival, with the fewest side effects. This program is supported by the following funding partners: The Kids’ Cancer Project, Cancer Therapeutics CRC, NSW Government, Australian Federal Government Department of Health, Kids Cancer Alliance, Cancer Research Foundation, Cure Brain Cancer Foundation, The University of New South Wales, the Rory Williams Fund, Robert Connor Dawes Foundation, Lions Club International Foundation, the Australian Lions Childhood Cancer Research Foundation and Tour De Cure.

Funding

Fundraising

“When she scored a pile of chocolate coins from her birthday piñata, Grace asked if she could

donate the money to help the ‘sick kids’. ”

Catherine, Grace’s mum

Grace McPhee, age 5, childhood cancer survivor and community fundraiser.


COM

MU

NIT

Y FU

NDR

AISI

NG

Sydney to Hobart

City 2 Surf

SMH Half Marathon

Netball

Scooter Challenge

Bondi 2 Bronte

World Series Swims

Audax Alpine

Bowral Classic

Fitz’s Challenge

Spring Cycle

Other community

Raffles 37%

Merchandise sales <1%

Bears program 14%Major Appeals 11%

Unsolicited donations

10%

Bears donated 91% Bears bought 9%

Community 9%

Regular giving 7%

Corporate and foundations 7%

Write a Book in a Day 2%

Pirate Day Friday 1%Cupcakes 4 a Cure 1%

Fundraising

Where does the money come from?

Total funds raised

in FY2017

$8.93million

Total bears sold 23,425

“I gave a bear to a 4-year-old going for surgery who was reluctant to sit on the trolley. We put Frankie Fireman on there with him and the difference was amazing.”Nurse Unit Manager, Victoria

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b.

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d.

e.

f.

g.

Sailing 2%

Running 4%

Netball 5%

Scooter Challenge 6%

Swimming 7%

Cycling 9%

Other community 66%

a. b. c.

d.

e.

f.

g.

Community fundraising activities


Raffles

With a keen eye on improving operating costs in FY2017, The Kids’ Cancer Project engaged a new telemarketing partner, Apple Marketing Group in September to deliver its national raffle program. Three major raffles were run across the year giving away new cars and Visa PrePaid Cards. Bellbowrie Motors assisted with discounts for vehicles in the annual Christmas Raffle, while early 2017 saw the start of a new partnership with Suttons Motor Group. Car prizes were won by supporters in Tasmania, Victoria, New South Wales, and Queensland.

Fundraising

Our fundraising activities

Major Appeals In FY2017, The Kids’ Cancer Project launched four major appeals generating over $1M in donations. The financial year kicked off with Childhood Cancer Awareness Month in September. The appeal featured two teens living with late effects, Alex and Deni. Christmas focussed on Baxter and encouraged people to ring ‘bells of hope’ for kids with cancer. The Australian community sent 1,500 handwritten well-wishes to the brave baby and his parents, Emma and Peter. The third appeal introduced Dasha along with parents Sheyne and Diego who shared their harrowing diagnosis story. Then at tax time, Nami shared the traumatic journey through treatment with daughter Dulcie.

In this financial year, these traditional direct mail campaigns benefited from greater segmentation of data minimising wastage while maximising results. The campaigns were also supplemented with digital marketing activity to drive deeper engagement.

Cupcakes 4 a CureThe sweetest fundraiser in The Kids’ Cancer Project suite is promoted as part of Childhood Cancer Awareness Month. In FY2017 home-cooks baked a difference and raised over $31,000 by selling delicious cupcakes at morning and afternoon teas all around Australia. During the year, in preparation for Cupcakes 4 a Cure 2017, a new website including loads of special features, recipes and downloadable bunting, party hats and more was developed to facilitate successful events.

REGULARGIVING

Write a Book in a DayThis national team writing competition is open to adults and students from Years 5 to 12. Their challenge is to write, illustrate and publish a book in just 12 hours while raising money for research. More than $190,000 was raised in FY2107. Behind the scenes, a new website with improved functionality was developed in preparation for the 2017 competition.

Pirate Day FridayOn Friday 9 June, Australia was invaded by over 57,500 pirates. Swashbuckling themed dress up days were held at 460 early learning centres, schools, clubs and workplaces all over the country raising nearly $60,000 for childhood brain cancer. This annual fundraiser, now in its third year, is managed co-jointly with The Adventurers (formerly Telethon Adventurers) in Western Australia. Despite different locations and time zones, the team successfully collaborated on a new website build including fun articles, tips on fundraising and downloadable bunting, eyepatches, posters and pirate hats.

YARRRR!With thanks to me hearties

at Ellerston Public Schoolfor this swashbuckling photo!

Bear program The Kids’ Cancer Project teddy bears continued to bring smiles to the young and young at heart while generating significant funds. During FY2017, more than 21,400 bears were donated anonymously to children in over 70 hospitals around the country. In addition, another 2,000 teddies were sold. Bear sales totalled over $1.25M in all. Further to this, bear program supporters provided cash gifts of over $90,000.

The Kids’ Cancer Project continued to strengthen performance, fuel growth and organisational sustainability by improving the fundraising model into a more diverse, efficient and sustainable model that provided a variety of opportunities for supporter engagement.

35%

Run, swim, cycle and moreThroughout FY2017, people in the community with hearts of gold set themselves personal challenges and chose to raise money for the scientific research kids with cancer so desperately need while doing something they love. In all, $230,000 was raised by runners, swimmers, cyclists, sailors, and a very special group of scooters in Western Australia. The Kane family and a bunch of mates dressed as super heroes, jumped on motorised scooters and travelled 600km from their home in Bridgetown to Perth, raising over $50,000 along the way.

t

Childhood Cancer Awareness Month

In September 2016 The Kids’ Cancer Project celebrated heroes. While this event was focused on building awareness, monies raised through the sale of gold ribbons and other gold merchandise throughout FY2017 totalled $7,500.

Raffles raised$3.3

million income

Students at OLMC Parramatta celebrate finishing their book in a day!

The Kane Family and friends in superhero scooter mode, including Declan, second from left, who sadly passed away in May 2017, aged eight years.

Regular donors were identified as an important group who provide sustainable income enabling long term commitment to research funding. Project Cure was developed in response to this strategic priority resulting in a return of over $635,000 which represented 35 per cent growth of The Kids’ Cancer Project tribe year to year.

Alicia, Sarah and Evie Weir featured in our “We see the hero in you” campaign, September 2016.


Will Allford Beaumont Hills, NSW

It was a 30-degree day on 29 January 2017, but that didn’t stop this nine-year-old from raising over $1,600 as he competed in his first Weet-Bix Kids TRYathlon. Will’s inspiration was his brother Ben, diagnosed with an aggressive kidney tumour at 18 months. Thankfully it was benign, but seeing his baby brother alongside other sick children in hospital left a lasting impression on the tenderfoot triathlete. Will’s mum, dad, nanna, grandpa and of course Ben, cheered him on.

“I felt that I really had to try my best because family and friends sponsored so much money to help the sick kids.”

“Ben’s tumour is now at the Tumour Bank at Westmead Children’s Hospital, helping with research and hopefully one day they will find a cure for childhood cancers,” said Will.

Jonathan Reid Rosebery, NSWBlessed with thriving twin boys, this new dad set a goal at the beginning of 2017; to give back to the community. The seasoned real estate agent did his homework online, seeking out a charity that truly helps children. He discovered The Kids’ Cancer Project, watched the video of Col, and like many before him, was inspired to raise money for research. Despite being more comfortable on a footy field than a running track, Jono challenged himself to do The Sydney Morning Herald Half Marathon on 20 May, 2017. He raised more than $1,100. “I was overwhelmed with pride and a sense of achievement at getting over the finish line. Some mates didn’t believe I could do it,” said Jono. “And even though I asked everyone in my network to donate, I was amazed by the people who gave so generously.”

In praise of the communityIt’s only through the generosity of everyday Australians that tens of millions of dollars have been raised and invested in scientific research to help children withcancer over the past two decades.

Fundraising

Jai's Falcons Flagstaff Hill, SAWhen one of their own was struck with neuroblastoma, the community of Flagstaff Hill rallied together for their #3 Falcon. Jai was an active kid who loved sport and being with his mates. For five and a half years he bravely fought the disease, but sadly passed away in March 2015. Friends and family formed “Jai’s Falcons” to continue his wish to fund research that would find better treatments and a cure for other kids with cancer. And just like Col Reynolds, they’ll never give up. Every year they coordinate three fundraisers; the Flagstaff Hill Football Club Gold Round; a team of 70 runners for the City to Bay; and Jai’s Walk held by his school. In 2016–2017 alone, this community raised $9,500.

Kate Boston Pearce, ACT In October 2016, the 30-year-old proudly donned a white jersey emblazoned with colourful hexagons and took on Fitz’s Challenge, Canberra’s toughest cyclosportive event. Kate raised almost $800 for childhood cancer research, just by doing something she loves. “It’s great seeing all The Kids’ Cancer Project jerseys out there on the day,” she said. “I like feeling I’m giving back to a worthy cause. I did most of my fundraising at work and it was actually a really good way to meet people!”

Anthony McQuire Doreen, VicHe’s a lawyer, a personal trainer, a high performance cricket coach and since participating in the St Kilda Mile Ocean Swim in March 2017, Anthony has been a hero for kids with cancer. The father of two raised $1,345 as part of that event and he’s planning to continue fundraising to find better treatments and a cure. “One of my son’s classmates was affected by childhood cancer and passed away in their Prep year,” said Anthony. “Having also lost family members to the disease, I’m aware of the impact it has on the entire family unit. That’s why I’m passionate about doing whatever I can to assist in raising money for research.”

Paul Delia Bass Hill, NSW

This optical fibre technical expert has a fun side gig as a Muscle Car event organiser. In June 2016, he and a passionate group of family and friends decided to donate all the profits from shows held around NSW to The Kids’ Cancer Project. In FY2017, that was over $4,000. “My son Dante was diagnosed with neuroblastoma when he was just 20 months old. The diagnosis effected the whole family. Today, Dante is a teenager. If it wasn’t for research, kids with cancer wouldn’t have the medicines and support that they do. I try and do my bit to raise money to say ‘thank you’ for all that you do for these beautiful children.”

Grace McPhee High Wycombe, WAFive-year-old Grace raised more than $5,000 by participating in May’s HBF Run for a Reason. But that wasn’t going to be enough for the pint sized philanthropist. When she scored a pile of chocolate coins from her birthday piñata, Grace asked if she could donate the money to help the ‘sick kids’. She was disappointed when she found out the currency was confectionary. If that wasn’t enough to make Grace a hero, the primary schooler is undergoing treatment for acute lymphocytic leukaemia with tumours herself. “Grace is incredibly empathetic,” said Catherine, Grace’s mum. “She sees people in much less fortunate situations than herself and wants to help them. So when she sees kids at hospital worse off than herself, she sees them as the sick kids.”

t

“I like feeling I’m giving back to a worthy cause. I did most of my fundraising at work and it was actually a really good way to meet people!” Kate Boston


QBE Foundation In FY2017, QBE Foundation cemented their relationship with The Kids’ Cancer Project with a 3-year agreement. During the past five years that QBE has supported the charity, hundreds of hours of volunteer time have been contributed along with $520,500 to fund research to find better treatments for children with cancer. The QBE partnership became very personal for the organisation in FY2017 when childhood cancer struck one of their own. Jack Bradshaw has worked for QBE for ten years. On 13 January 2017, his seven-year-old daughter Carys was diagnosed with DIPG. The Kids’ Cancer Project offer best wishes to the Bradshaw family who have relocated to London to participate in a clinical trial.

In praise of our partners

Commending our corporate supporters

Partnerships are forged through shared vision and values. The Kids’ Cancer Project is proud to work with corporate citizens who choose to make a difference in the lives of children with cancer.

Thanks to all the companies who have given their support in fundraising, volunteering or being involved in building brand and raising awareness, helping the charity fund vital medical research.

Suttons City In May 2017, Suttons City Rosebery (NSW) announced its partnership with The Kids’ Cancer Project. The vehicle vendor agreed to assist with the provision of eight cars for use as major prizes in raffles held four times a year, ensuring more money goes directly towards funding research. In addition, during their end of financial year sale, the dealership donated $100 from every car sold and held a sausage sizzle, raising over $8,000.

Netball NSW / NSW Swifts Now in its eighth year, this partnership continues to drive community awareness as it inspires members of all 118 affiliated associations to fundraise for childhood cancer research. A highlight on both organisation’s calendars is the annual Crazy Hair & Sock Day. In this wonderful wacky way to collect gold coin donations, players, officials and fans are encouraged to go crazy with colour. This year’s event was officially held on Saturday, 20 May 2017. As skies darkened in the lead up to the weekend and long-range weather forecasts predicted storms, it was thought the event might be a wash-out. Fortunately, the sun came out and in all, almost $50,000 was raised by clubs all over the State.Dasha, our Easter 2017 campaign helper, was thrilled to be invited on court at the annual NSW Swifts Charity match.

Bayer The long-term partnership with this global pharmaceutical company continued with workplace giving, corporate sponsorship, fundraising and staff volunteering. In FY2017, Bayer also generously sponsored a cocktail function at Parliament House, Canberra during Childhood Cancer Awareness Month to engage leading politicians. In all, almost $8,000 was contributed to charity.

Total income

from Foundations

$238,680

Media and marketing support In FY2017 new relationships were formed with national magazine and newspaper publishers resulting in free advertising space valued at over $150,000, reaching 6,509,000 readers. This was used to promote campaigns throughout the year. The Kids’ Cancer Project would like to thank News Corp, News Life Media and Bauer Media Group for their generosity and for providing the charity with unprecedented national print coverage. AJF Partnership, an independent creative agency, generously provided pro-bono strategic advice on the positioning of The Kids’ Cancer Project brand. In a cluttered childhood cancer environment, it was determined the charity could cut through with one clear message; science is the solution. This was then translated into a new tag line that says it all;

Science. Solutions. Survival.Now known as Richards Rose, the agency created a television commercial featuring cancer survivor, Dr Alex Willows. This marketing asset is set to become part of the national roll-out of the new branding in 2018. The Kids’ Cancer Project would like to acknowledge the following agencies that provided advice and services throughout FY2017: Elevate, Levo, and Liquid Ideas.

Putting the fun in fundraising: Community Fundraising Manager Kim Babbage accepts a generous donation from the Tangalooma Resort crew, including Oscar, far left.

The Weir family meet Prime Minister Malcolm Turnbull at the Bayer sponsored cocktail

function at Australian Parliament House as part of Childhood Cancer

Awareness Month, September 2016.

Driving new partnerships: CEO Owen Finegan with Nick Fradd, General Manager, Suttons City.

FDC Construction & Fitout Forest Lodge, NSW

This award-winning company generously donated all proceeds of their 2016 Melbourne Cup luncheon to The Kids’ Cancer Project. On 1 November, over 500 industry professionals attended the event at Sydney’s Hilton Hotel. Proceeds of ticket sales along with live and silent auctions raised over $200,000 for childhood cancer research.

Smartline ClevelandCleveland, Qld Karen Le Comte, Director of a local mortgage broker, has held a Christmas in July celebration annually since 2011. The first event was hosted in response to hearing the news that the three-year-old son of a long-term friend and client had been diagnosed with neuroblastoma. The festive fundraiser has captured the hearts of the community and in FY2017, $12,930 was raised. “I am humbled and encouraged by the support of those I know in the community,” Karen said. “I’m planning to host this event every year for The Kids’ Cancer Project. We’re only a small office, but the support we rally up makes a big impact.”

Fundraising

Tangalooma Island ResortMoreton Island, Qld

Mother of three boys and hotel manager at Tangalooma Island Resort, Brianna Preobranjensky inspired her workplace to start raising money for childhood cancer research in 2014 when her middle born, Oscar, was diagnosed with neuroblastoma. “If my son had been diagnosed with cancer 10 years earlier, it would have been a death sentence,” said Brianna. “Because he was part of a clinical trial, he had access to new treatment that saved his life. We’re lucky, Oscar’s story is such a happy one, but there are side effects and ongoing unknown risks from his cancer treatment.” In FY2017, the resort donated over $6,500 from collection tins around the resort featuring Oscar’s smiling face along with $5 for every whale spotted during the whale watching season.

THE KIDS’ CANCER PROJECT30

When people think of cancer, they don’t think of kids. Yet it’s a disease that kills more Australian children

than any other. Each death represents at least 65 years of life lost from normal expectancy.

Sixty years ago, cancer was nearly always a death sentence for a child. Today, 8 out of 10 children survive.

But it’s important to remember that these developments aren’t across all cancer types. While survival rates for acute lymphoblastic leukaemia are now 90 per cent,

brain cancer survival rates have remained at 50 per cent for decades.

Let’s also not forget that of the young Australians who have survived childhood cancer, 4 out of 5

encounter at least one physical or mental health issue. These are the traumatic late effects of treatment.

Scientific discoveries have advanced our knowledge and treatment of the disease resulting in the

improved survival rates we see today.

Only research can give hope to the hundreds of children

diagnosed with cancer each year.

The facts

In memoriam

Declan Kane20.04.09 - 18.05.17 Passed away from neuroblastoma

@kidscancerproj

TheKidsCancerProject

+ThekidscancerprojectOrgAu

The Kids Cancer Project

@thekidscancerproject

1800 651 158 thekidscancerproject.org.au

Documents

Annual Report 2017 - thekidscancerproject.org.au us... · Annual Report 2017. ... Deni joined our marketing team for a one-month internship, ... chip multinationals Unilever Australasia