Who we re for We support children with cancer, and strive for better and less harmful treatments.
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- Arlene Jacobs
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2 The Children s Cancer Foundation was established in 1992 by parents of children with cancer. Since then, we have distributed more than $43 million to enable children with cancer access to the world s best available treatment and support. As a parent, we sign up for many things. For every moment of exhilaration, happiness and pride, there is tiredness, worry and angst. But, for some families, it is significantly more demanding; far beyond anything they have likely faced before. Having a child diagnosed with cancer is the beginning of a journey that challenges the hardiest amongst us. As parents, the simple fact remains: we would do anything for a sick child. The Children s Cancer Foundation adds light to the lives of children and families, as they face the pressures of cancer, to ensure that every child can shine now and in the future. The Foundation provides vital funding for clinical trials, to build world-class programs of clinical research into childhood cancer, to enhance clinical care within hospitals and to support children and their families through treatment. About childhood cancer Cancer is a terrible disease, but especially so for a child. Cancers that develop in children are often different from adult cancers, resulting from genetic changes in cells that occur very early in life, sometimes even before birth. Unlike adult cancers where risk can be modified through lifestyle choices such as quitting smoking or losing weight, there are no such risk factors for children. 1 Funding for childhood cancer research New treatments are needed for children with cancer, to improve cure rates and to decrease the toxicities of therapy. Survival rate has increased to around 80% but, every year, there are many children who cannot be cured of their disease. Because the number of diagnoses of childhood cancer is low compared with adult cancers 2, childhood cancer receives a fractional distribution of government and philanthropic funding compared with adult cancers. Who we re for We support children with cancer, and strive for better and less harmful treatments. What we do We aim to ensure that every child achieves the best outcome possible, through funding clinical trials, clinical research, clinical care and family support programs. Why we do it We believe that every child should laugh, dance, play and live as only a child can. Fast facts This year, some 810 children in Australia will be diagnosed with cancer; another 5,600 will continue their treatment. One in five children will die; of those cured 10% will develop a treatment-related cancer in later life. Almost half of childhood cancers are diagnosed in children aged 0 4 years. Government cancer research funding is disproportionately directed towards adult cancers. Clinical trials offer exciting new treatments to children but are not funded through government hospital budgets. Average age at cancer diagnosis Adults Children 67 6 Average years of life lost to cancer Multiple new cancer drugs are emerging for adults, targeted at specific genetic abnormalities in tumours many of these drugs are very relevant to childhood cancer. The first opportunity for children to be treated with such new drugs comes through a clinical trial, which is considered by hospitals as research. Indeed these treatments are completely unavailable outside of a clinical trial. Hospitals do not fund clinical trial research and thus staff costs are funded almost exclusively by philanthropy. 1 Youlden D, et al. (2010) Childhood cancer survival in Australia, Viertel Centre for Research in Cancer Control, Cancer Council Queensland and the Australian Paediatric Cancer Registry. 2 ~810 diagnoses of childhood cancer per year compared to ~15,000 diagnoses of breast cancer or 19,000 diagnoses of prostate cancer in Australia. Australian Institute of Health and Welfare: Cancer in Australia An Overview 2012.
3 Impact Story: "I had cancer, it never had me" Kellie was 15 when she was diagnosed with Acute Myeloid Leukaemia. A normal life of netball, rowing and hanging out with friends quickly turned into one of hospital visits, chemotherapy and endless test and medical procedures. Kellie spent months in hospital where she was required to undergo treatment that would challenge her both physically and mentally. There was the nausea and the fatigue, the pain and the nasal gastric feeding tube; there was the distress and the fear. However her positivity and sense of humour never left her for long. After months of waiting, a life-saving bone marrow transplant gave Kellie a chance to rebuild her life. Sourcing stem cells from an umbilical cord in Switzerland, doctors were able to provide Kellie with the treatment necessary for her survival. Eighteen months after her diagnosis, Kellie returned to high school graduating just a year later. From her poor prognosis 10% survival rate to living cancer free, Kellie s story demonstrates how the work of the Children s Cancer Foundation makes a life-saving difference. With our support and funding, Kellie had access to an international bone marrow transplant match and the extensive clinical and therapeutic care that contributed to saving her life nurses, doctors, bone marrow specialists, clinical trials, art and music therapy. What we do Family support The Children s Cancer Foundation funds hospital employees such as Family Resource Coordinators at The Royal Children s Hospital and Monash Children s Hospital. The Family Resource Coordinator is the non-medical friend parents can turn to for a shoulder to cry on, to help navigate the world of treatment and to help with the family s day-to-day needs in hospital. The focus is on the provision of support beyond that provided by the medical and allied health staff: for instance in the coordination of specialised activities (individual and group) for diversion and play allowing parents time to attend a medical consultation or simply take a break. Therapeutic Clinical Care As part of a holistic approach to a child s treatment, the Children's Cancer Foundation funds programs that help children not only cope with the pain, but also help promote a normal environment of creativity and expression and give children a reason to smile. Art Therapists and Music Therapists, hospital employees at both Monash Children s Hospital and The Royal Children s Hospital, are key to reducing anxiety from treatment. They help children process the experience of illness, hospitalisation, medical procedures, separation from siblings and normal life. Music Therapists provide therapeutic music lessons, improvisation, song-writing, active music making, and relaxation sessions. Art Therapists encourage children to explore different art forms it is an effective method of recording and reflecting upon a significant childhood event.
4 Clinical Research Brilliant minds are working hard to find a cure for cancer. The Children s Cancer Foundation has committed $10.6 m over 10 years to attract the world s best childhood cancer clinical researchers and build a significant program of clinical research. Molecular Diagnostics: Recent advances in genomic techniques are driving the development of treatment programs customised to the individual child based on the characteristics of their personal cancer (or the molecular and genetic disruptions that have occurred). Through genomic analysis we can understand the characteristics of individual cancers and define how these respond to different forms of treatment. The appointment of Associate Professor Paul Ekert, Head of Molecular Diagnostics at The Royal Children s Hospital / Murdoch Childrens Research Institute, in March 2014 funded by the Children's Cancer Foundation has positively changed the treatment pathway of numerous children. Clinical Trials: For children with cancer who have exhausted all standard treatment options, a clinical trial can provide another chance. We fund hospital staff to increase the number of trials available for children and facilitate access to new treatments. Immunotherapy clinical trial: For years, the only methods of treating cancer were surgery, chemotherapy or radiation therapy. Recently, treatments have evolved towards targeted immunotherapies therapy that utilises the patient s own immune system to combat cancer. Lymphocytes are withdrawn from a patient, modified in a culture to boost their tumour-fighting ability, and then re-infused in the patient. Treatments using these genetically engineered immune cells have generated remarkable responses. In 2016, The Royal Children s Hospital opened this trial for relapsed acute lymphoblastic leukaemia patients, available outside of the US for the first time. The Children's Cancer Foundation is funding critical staff resources to initiate the trial. Our capabilities The Children s Cancer Foundation is exceptional at bringing people together and harnessing their generosity of spirit. We rely on the generosity of a wide range of supporters individuals, families, businesses and philanthropic groups. Our integrity From to average annual distributions to hospitals and research institutes exceeded $1.34 million. Our average administration overheads over this period were 9% of revenue. We keep our overheads down through the generosity of many volunteers and our pro bono supporters office space, IT, marketing, branding, website, design, legal, auditing and insurance.
5 The Million Dollar Lunch The success of our annual fundraiser The Million Dollar Lunch is crucial to the ongoing work of the Children s Cancer Foundation. The quality of the event is apparent from the calibre of our Cornerstone Partners Crown Resorts, AFL, Qantas, Volvo Dealer Group Victoria and CrownBet our Patron, Gillon McLachlan and The Million Dollar Lunch Committee, as well as the 650 influential guests who attend. The event is run with the utmost efficiency and all revenue and costs (including the time of the Foundation s small administrative team) are fully disclosed. In 2015 and 2016, event costs were averaged at just 8% of gross revenue. Since 2005, The Million Dollar Lunch has raised more than $15 million, which has underpinned our program funding and been applied to more than 40 projects across: Clinical care hospital staff to enhance service delivery including oncology consultants, nurses, dieticians, pharmacists, neuropsychologists, mental health clinicians, clinical fellows; Clinical trials hospital staff to increase the number of trials available for children and facilitate access to new treatments; Clinical research investigations into late effects of treatment, new diagnostic tests for tumours, resourcing for a tumour biobank, molecular diagnostic tests, establishment of cancer gene panels; Family support The Beaded Journey (where a symbolic bead marks each treatment or significant milestone), therapeutic books, Family Resource Coordinators, Art Therapists and Music Therapists (including instruments and art materials to support their work). Contact E: hello@childrenscancerfoundation.com.au T:
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