Discover. Prevent. Cure CONTENTS

MESSAGE FROM THE CHAIRMAN & DIRECTOR

BOARD OF DIRECTORS

2016 HIGHLIGHTS

INTRODUCING OUR IMPACT REPORT

PHILANTHROPY REPORT

DONOR HIGHLIGHTS

WHO WE ARE AND WHAT WE DO

OUR FINANCIALS

COVER IMAGE: ELENOA AND JAYDA WISE are at the of everything we do

Right now in Western Australia:

• one child each fortnight is fighting for every breath in intensive care due to asthma

• one in every 20 teenagers has major depression

• three out of four Aboriginal children in remote areas have middle ear disease which can affect their hearing and learning

• 5,000 children with autism cope daily with disabilities that rob them of their full potential

• parents of 1,000 children with Type 1 diabetes are apprehensive that when their children go to sleep at night, they might not awaken because of a dangerous plunge in their blood sugar

• 122 children are fightingcancer for their lives

It is for these children and their families, that we at Telethon Kids are committed to discovering causes, cures and treatments for these illnesses and diseases, and many more.

Our team of more than 500 dedicated researchers, students and support staff are passionate about research that makes a real difference so that every child has the very best opportunity to enjoy a happy and healthy childhood.

Discover. Prevent. Cure. Together, that’s how we make a difference. Find out more at telethonkids.org.au Jonathan Carapetis (Director) & John Langoulant (Chairman)

MESSAGE FROM THE

fter three years of significant change and progression and communication, while still supporting the introduction of new programs to implement wonderful collaboration and networking that the RFAs Aour Strategic Plan, the focus in 2016 was on have brought to the Institute. consolidation and supporting the development and In our Professional Services, the Chief Operating Officer retention of our most important priority, our people. This role has been split into Director of Corporate Services has been particularly timely, given that as an organisation and Director of Research Services and Innovation, we are about to embrace another major transition with who together with the Director of Communications and the move into our new facility within the Perth Children’s Development report to the Executive Director and are also Hospital in Nedlands. on the ILT.

DEVELOPING OUR PEOPLE Another theme that consistently arises is the retention and recruitment of “key talent”. Our new Supporting In both our Strategic Plan and in feedback from our Research Leaders scheme is a competitive process to staff engagement survey, there has been discussion retain, incentivise and support our best and brightest by about the need for certainty of organisational structures, providing salary underwriting for up to 5 years, in addition particularly for our researchers. Over the past year we to a support allowance of $100,000 for the top ranked have clarified the makeup of our research teams, headed applicants. We are delighted to have named Andrew by Team Leaders, who are then connected with research Whitehouse, Anthony Bosco, Deborah Strickland, James programs that sit within one of four Research Focus Areas Fitzpatrick and Tom Snelling as the inaugural Telethon Kids (RFA). The Heads of each RFA have both a strategic Leadership Fellows as a result of this process. This will be and a management role, sit on the Institute Leadership an annual call with applications rigorously reviewed by Team (ILT) and report to the Deputy Director. The aim is to internal and external panels to ensure these Fellows are of provide more effective line management support, career the highest calibre.

2 | TELETHON KIDS INSTITUTE In terms of strategic recruitment, we were very pleased families to enhance the development and learning to secure outstanding brain cancer researcher Professor of all children, particularly those from low-income Terrance Johns to head our Telethon Kids Cancer families. Under the Directorship of Professor Donna Centre. Professor Johns’ research team is currently Cross, CoLab has undertaken extensive consultations based at the Hudson Institute of Medical Research within the sector to establish its strategic priorities and at Monash University. He has been making regular program of work. visits to Perth with the intention of moving his research In the north of our state, Telethon Kids Kimberley is program here later in 2017. We augmented this with gaining momentum. The vision is to build an ongoing the appointment of Dr Sebastien Malinge from France, presence and platform for sustainable, culturally who will also join us in 2017 as the Children’s Leukaemia appropriate and relevant research that brings positive and Cancer Research Foundation (CLCRF) Fellow in change to the lives of children in the Kimberley. Of Leukaemia Research. course this can’t be done by just one organisation, Equity and diversity are priorities within our people and we are very pleased to be working in close strategy. We are already well into the implementation of collaboration with Aboriginal Health Council of WA, our Aboriginal Employment and Career Development the Kimberley Aboriginal Medical Service, UWA’s Rural Strategy. We have also signed up to the Australian Clinical School of WA, Notre Dame University, Rural Academy of Science Athena SWAN pilot – an Health West, and the WA Country Health Service to initiative of universities and research organisations to establish a hub of Aboriginal health research based in progress gender equity in STEM (science, technology, Broome. engineering, mathematics, medicine) fields. This is critical for an organisation like ours, with more than two- COMMUNITY thirds of our workforce made up of women. As part of Once again there has been a strong focus on both this, we have made efforts to ensure gender diversity on engaging and involving the community in our research. our main Institute committees (ILT, Institute Management Telethon Kids, together with the UWA School of Team, Scientific Advisory Council and Research Population Heath, has been an international pioneer in Excellence Council). The Board is also undergoing a the process of actively involving health consumers in the process of renewal to ensure that its own structure is research process. Therefore, we were very heartened to informed by the same priorities. see the program picked up by the WA Health Translation Network to enable its rollout more widely, thanks to COLLABORATION significant funding from Lotterywest. Congratulations to Collaboration is at the core of our Institute model. With Anne McKenzie and her team for ongoing leadership the pending move to the Perth Children’s Hospital, in this important field. A new Youth Advisory Committee we have been pleased to be part of the formation of has now been formed at Telethon Kids and we remain committed to this important initiative. a Child Health Research Strategic Council, Chaired by Hon. Hendy Cowan, that is promoting a cross campus Giving back to the community that supports us remains approach to excellence in research and the translation critical. Our annual Discover Day doubled in numbers of knowledge from bench to bedside. There are a with a huge response from families despite terrible number of initiatives that are flowing from this, including weather. We also hosted an expert panel on vaccination the setting of a PCH campus research strategy and to respond to community questions on the issue. a centralised unit for supporting clinical research, Unfortunately the event was over-taken by the anti- generously supported by funding from Telethon. vaccination lobby, who prevented a rational discussion. However the resultant publicity and communication Our relationships with WA’s universities continue to strategy meant we were able to get the information out grow with active research partnerships with all WA to a far larger audience than we had initially envisaged. universities. Our strong relationships with UWA and It demonstrates the important role of organisations such Curtin University will be finalised during 2017 in new as ours in providing the evidence and discussion on affiliation agreements that ensure mutually beneficial scientific issues the community craves. In November we flows of research infrastructure and research outputs. were privileged to host Professor Stephen Holgate, one of the world’s most highly-cited biomedical researchers One of the most exciting developments has been and a leading expert on respiratory health, for our the establishment in partnership with the Minderoo annual community lecture. Professor Holgate’s visit Foundation of CoLab – Collaborate for Kids, a strategic raised the profile of environmental pollutants as an initiative to bring together community, researchers, important issue for child health and development and he policymakers and practitioners to improve the delivery was very generous in his time with our researchers. of children’s services and capacity of communities and ANNUAL REPORT 2016 | 3 NEW BUILDING OUR THANKS

Our move to a state of the art new facility at Perth’s There are many to thank for the ongoing success and Children’s Hospital has been significantly delayed. As has growth of Telethon Kids Institute. As Channel 7’s Telethon been widely reported, there were technical and contractual prepares to celebrate its 50th anniversary, its commitment issues that meant the main hospital building was not to us as our Principal Partner underpins our success. completed within the projected time frame. The knock-on Our Strategy Enabling Partner BHP has supported the effect has meant that our builder, Multiplex, was not able to implementation of our strategic plan and our organisational begin work on our fit-out until 2017. While there has been reforms as well as supporting FASD research in the Pilbara. significant frustrations with the progress of the project, Wesfarmers, the Minderoo Foundation, the Children’s there is no doubt that the end result will be worth the wait. Leukaemia and Cancer Research Foundation and The Credit must be given to our Head of Transition Don Koontz Adventurers all support significant programs of research. for his careful navigation through the various building and We are also grateful to Stan Perron Charitable Foundation, contractual issues. We very much appreciate the ongoing Cystic Fibrosis Australia, McCusker Charitable Foundation, support of Richard Mann, John Hamilton and the Strategic The Kids Cancer Project, John Rothwell, Feilman Projects team and the Child and Adolescent Health Service Foundation and DR Capital for their major gifts towards our Executive. We are hopeful of a move in early 2018. work. We have been humbled by those who have left a lasting legacy towards child research in their Wills, notably Telethon Kids will retain ownership of the existing building the estate of George Church, John Summers, Forreste in Subiaco that will be offered for lease. It is our intention Williams and Gwendolyn O’Driscoll. Indeed, our donor to retain some of the space for a new initiative to provide community has been passionate and generous supporters research based clinical services. of Telethon Kids. FINANCIALS The voluntary service by the Directors on our Board is very much appreciated. We particularly thank Robyn Owens, Some explanation should be made of the Institute’s Kate George, Michael Good and Michael Manford for financial result for 2016. The Institute achieved a greater their contributions as they step down and welcome new than anticipated surplus (profit from ordinary activities of Directors Alex Brown, Jozef Gecz and Nicole O’Connor. We approximately $7.5 million) as an unexpected outcome as acknowledge the ongoing support and involvement of our a consequence of the following requirements of financial Patron and Founding Director Fiona Stanley. reporting standards: There is much to look forward to in the year ahead with 1. Receipt of approximately $2.2 million in bequests, the move to the new building and the consolidation which has been allocated for strategic recruitment of initiatives outlined in the strategic plan to create a including Professor Terry Johns (mentioned above). new blueprint for a research institute. We pledged to Australian Accounting Standards required the funds be measured on the difference that we make to child to be recognised on receipt in the profit and loss health and wellbeing and encourage you to read our statement. accompanying IMPACT report to see how we are delivering 2. Approximately $3.4 million in funds that were already on that challenge. held on the Institute’s Balance Sheet as “deferred income” were re-classified by our auditors as income earned during 2016 and transferred to the Statement of Profit and Loss following a comprehensive review of our Work in Progress balances. These funds had John Langoulant Jonathan Carapetis already been committed to additional child health Board Chair Director research activities outside of the Institute’s normal operational budget.

Not taking into account these extraordinary items, the Institute’s underlying operating profit for 2016 was $1,844,434.

4 | TELETHON KIDS INSTITUTE ANNUAL REPORT 2016 | 5 BOARD OF

Our Board of Directors all give their time voluntarily and work together to guide the overall business of the Institute, bringing a diverse range of experience from the business, academic and community sectors. We are extremely grateful for their dedication and the governance they provide us.

JOHN LANGOULANT AO (CHAIR) John became Chair of the Telethon Kids Institute in 2008 following his appointment to the Board in 2005. A respected business leader, John holds a number of board positions including Chair, Government Employees’ Superannuation Board; Chair, Dampier to Bunbury Pipeline; Chair WA, Westpac Group; Chair, Pawsey Supercomputing Centre; Chair, Committee for Perth; and President, CEDA WA. John also consults to Curtin University and Deloitte. He also Chairs the Institute’s Remuneration Committee, and is a member of the Finance Committee.

ALEX BROWN Alex is an Aboriginal medical doctor and researcher with an extensive and unique research program focused on chronic disease in vulnerable communities, with a particular focus on outlining and overcoming health disparities. Alex is the Leader of the Aboriginal Research Unit at SAHMRI and Research Chair of Aboriginal Health at the University of South Australia. He was recently admitted to the Australian Academy of Health and Medical Sciences and joined the Telethon Kids Institute Board in 2016.

JONATHAN CARAPETIS Jonathan took up the position of Director of the Telethon Kids Institute in July 2012. A leading paediatrician and infectious diseases specialist, Jonathan is recognised as a leading mind in the Australian health field, with particular expertise in Indigenous child health. He is a member of many state, national and international bodies including the Association of Australian Medical Research Institutes Board, NHMRC Australia Council, One Disease at a Time Foundation Board, WA Immunisation Strategy Implementation Steering Committee, Youth Justice Board, Australian Indigenous Doctors’ Association, WA Health Translation Network Executive Board, Editorial Board Member of Heart Asia (British Medical Journal), and RHDAustralia Advisory Committee.

JOZEF GÉCZ Jozef joined the Board of Telethon Kids in 2016 and is also a member of the Institute’s Scientific Advisory Council. Jozef is a NHMRC Senior Principal Research Fellow and Professor of Human Genetics at the Department of Paediatrics at the University of Adelaide, and established and heads the Neurogenetics Research Program at the Women’s and Children’s Hospital, Adelaide. He is a Fellow of the Australian Academy of Health and Medical Sciences.

6 | TELETHON KIDS INSTITUTE Our thanks to Kate George, Robyn Owens, Michael Good and Michael Manford who all retired from the Board in the past year.

JIM McGINTY AM Jim joined the Telethon Kids Board in 2009 after stepping down from a long political career which included positions of WA State Health Minister and WA Attorney General. Jim is also on the Boards of Brightwater Care Group and Access Housing Australia, and is a volunteer with Fremantle Sea Rescue. He is also a member of the Institute’s Finance Committee.

NICOLE O’CONNOR Nicole joined the Telethon Kids Board in 2016 and is also a member of the Remuneration Committee. Nicole is General Manager Western Australia of SAP, a market leader in enterprise application software. Nicole is closely embedded into SAPs social programs for Young People – Young ICT Explorers & STEM – and is also the Executive Sponsor of the SAPs Business Women’s Network in WA. Nicole is also as Board member of Fremantle Primary School, a Trustee of CEDA, and Member of both the Committee for Perth and the Australian Institute of Company Directors.

JEFF DOWLING Jeff joined the Telethon Kids Board in 2009, bringing significant financial expertise as Former Managing Partner of Ernst & Young Western Region. Jeff is a Fellow of the Australian Institute of Company Directors, the Institute of Chartered Accountants Australia and the Financial Services Institute of Australasia. His board appointments include the West Australian Symphony Orchestra, Sirius Resources NL (Chair), St Andrews Insurance Ltd (Chair) and Metropolitan Redevelopment Authority. Jeff is also a Director of Atlas Iron Limited and Neptune Marine Services Limited. Jeff also Chairs the Institute’s Finance Committee.

MICHAEL McANEARNEY Michael is a Founding Director and Chief Executive Officer of Gerard Daniels. Michael joined the Board of Telethon Kids in 2012 and is also a member of the Institute’s Risk and Compliance Committee and Remuneration Committee. Michael is a Member of the Australian Institute of Company Directors and the British Institute of Company Directors.

ROHAN WILLIAMS Rohan accepted a position on the Telethon Kids Board in 2013 and also Chairs the Institute’s Development Committee. Rohan is Executive Chairman of Dacian Gold Ltd and was the founding CEO and Managing Director of Avoca Resources Ltd prior to a merger in 2011 to form Alacer Gold Corp where he was a Non-Executive Director until September 2013. Rohan has worked extensively in the resources sector including with WMC Resources Limited where he held Chief Geologist positions at St Ives Gold Mines and the Norseman Gold Operation.

ANNUAL REPORT 2016 | 7

Three outstanding Telethon Researchers at HIGHLIGHTS Kids Institute researchers were named finalists in the Telethon Kids and the 2016 Premier’s Science University of Sydney Awards - Professor Carol have developed Three Telethon Kids Bower in the Scientist of Australia’s first researchers were finalists the Year Award, Dr James national diagnostic in the 2016 Australian Fitzpatrick in the Early tool for Fetal Alcohol Museum Eureka Prizes. Career Scientist of the Year Spectrum Disorder category, and Tim Rosenow (FASD). Dr Timo Lassmann in Student Scientist of the Year category. was as a member of the A new state-of-the- ‘FANTOM5’ Project that won art X-RAD radiation the Scopus Eureka Prize for A new project, platform - the first of its Excellence in International kind in Australia - arrived a partnership Scientific Collaborations. in WA, allowing cancer between the researchers to access cutting edge technology A study by Telethon Kids Professor Jonathan to investigate ways Telethon Kids Institute and Carapetis BHP Billiton in to improve radiation found Aboriginal was a finalist for the 2016 therapy treatment. The mothers are at collaboration with equipment was funded CSIRO Eureka Prize for Wirraka Maya a significantly Leadership in Innovation by a $500,000 grant greater risk of Health Services from BHP with significant and Science and preventable and the Hedland contributions from the Ian death than other FASD Network, Potter Foundation, Chris Australian mothers Dr Tom Snelling was launched in and Tia Ellison, Telethon and are much was shortlisted for the Adventurers, Tour de Cure, the Pilbara with the and Telethon Kids Institute. more likely to 2016 3M Eureka Prize for bold goal to make die from external Emerging Leader in Science. FASD history in the A NHMRC Partnership causes, such as Pilbara. accidents, suicides Project grant will and homicides, Lotterywest awarded a allow a collaborative and they usually million Telethon Kids team of researchers left more and grant researchers, in to track the progress $3.2 of 12,000 from birth younger children. to the WA Health Translation collaboration with the Network to allow the highly National Centre of to age five to identify successful Consumer Involvement Immunisation Research what services are Cancer Program of the Telethon Kids and Surveillance, valuable to families to support the health researchers at Institute and UWA School of showed the protection Population Health to be expanded and wellbeing, Telethon Kids children receive from to 18 other WA organisations. their three baby doses education and care of discovered their children. a new drug of whooping cough Dr James Fitzpatrick was vaccine starts to wear combination named a finalist in the off after a couple years, The UK’s Professor that could help presented WA Australian of the Year leading to a toddler Stephen Holgate improve survival our Annual Community awards for his work to booster of the vaccine rates for babies Lecture with a compelling reduce alcohol-related being added to the with leukaemia. presentation about how the harm in babies. National Immunisation air we breathe affects so The findings Schedule. much more than our lungs. give new hope to babies under the 12 months of age who have poorer outcomes compared to older children.

8 | TELETHON KIDS INSTITUTE Professor Leading brain cancer State-of-the-art 3D face Telethon Kids Institute researcher Professor scanning technology arrived researchers were awarded Donna Cross at Telethon Kids to allow was appointed Director of Terrence Johns was more than researchers to learn more million in CoLab, hosted at Telethon appointed the Head about subtle facial differences $ research Kids. CoLab brings of the Telethon Kids in children with autism 10 funding together researchers with Cancer Centre. which may help with earlier consumers, educators, identification and diagnosis of from the National Health leading clinicians, and autism in children. and Medical Research other practitioners to Researchers Council including improve service delivery seven project grants, from Telethon Telethon Kids Institute to meet the needs of two scholarships, four Kids led the researchers received vulnerable children, fellowships and Tropical families, and communities. national Trans* Disease Collaborative Pathways survey $1 million Research Program. Research from to investigate how from the FutureHealthWA we can better program for research into better Telethon Kids ways to treat skin conditions like showed a popular support trans and The world leading skin sores and scabies in the education program Australian Autism gender diverse Kimberley. where teenagers Biobank, coordinated young people. care for a “robot” Dr Gail Alvares from by researchers at baby fails to reduce our Autism research Telethon Kids, was teen pregnancy, Professor Alex Brown, team was named launched to collect Ms Nicole O’Connor and one the ABC’s Top 5 and could in fact Professor Jozef Gecz detailed information increase the risk of Under 40 scientists in on 5,000 children joined the Board of the pregnancy. Telethon Kids Institute. residence, giving her the with Autism with the We thanked retiring board opportunity to undertake aim of identifying members Professor Robyn a media residency at potential genetic and In the world first study, Owens, Professor Michael Radio National. biological markers researchers at Telethon Kids Good AO and Kate George for autism, leading to found children with vitamin who all made outstanding D deficiency are more likely contributions to the Institute. The Telethon Kids Institute’s earlier detection. to develop asthma, showing Wesfarmers Centre of Vaccines & Infectious Diseases hosted Hot repeated bouts of vitamin D A grant from 100 Women Topics in Infection & Immunity in deficiency in early childhood will train 10 Aboriginal Telethon Kids was one Children – Perth, a clinical training were linked to higher rates women from remote of six leading health course in childhood infectious of asthma at aged 10, as well communities across the organisations to join the diseases based on the successful as allergy and eczema. Fitzroy Valley as community ESPID-Oxford course. END RHD Coalition to end health researchers while rheumatic heart disease in they work on a Telethon Results released from Australia, a condition that Telethon Kids Institute Kids project exploring long- the Australian Early disproportionately affects researchers have shown term intervention for Fetal Development Census Indigenous Australians. that a widely accepted Alcohol Spectrum Disorder. (AEDC), a population test for diagnosing measure of how young asthma may not be Researchers from Telethon children have developed accurate in some Kids and UWA found that Telethon Kids Institute by the time they start their settings, such as in young children living researchers found a strong first year of full-time school, screening defence force with an ongoing serious link between excessive showed that in 2015, most children in Australia were disease were up to 34 recruits and firefighters, internet use and increased on track. per cent more likely with researchers urging levels of psychological to be behind in their caution in how the test distress, including suicidal development. is used. thoughts, in young people. Find out more at telethonkids.org.au

ANNUAL REPORT 2015 | 9 INTRODUCING OUR

Discover. Prevent. Cure.

ight now at Telethon Kids, our researchers Our IMPACT Report highlights some of the are working hard to discover, prevent and research that is making a difference right now, Rcure. those projects that are on their way to having a direct impact on kids and families, and research Research is an incremental process built over that is changing the way we think about these many years. It starts with developing a deep complex problems. understanding of disease, working out how it might be tackled, implementing a possible We also highlight some of the collaborative solution and then evaluating it over time to see if partnerships - with community, service providers, cures, treatments or interventions have made a government, industry - that are helping us to have difference. This pipeline of research can take many an impact locally, nationally and internationally. years with many milestones along the way.

PARADIGM IN THE COLLABORATING TRANSLATION SHIFT PIPELINE FOR IMPACT

This research This research This research is And this research has been actively changes the very in the pipeline shows how we translated into way scientists think towards translation work with others to policy or practice make a difference

10 | TELETHON KIDS INSTITUTE TRANSLATION TEEN PREGNANCY RATES Our research shows ‘robot’ babies, which have been used for decades to prevent teenage pregnancy, may actually increase it.

Sarah Johnson and Sven Silburn. Photo courtesy The West Australian.

SHIFT SPINE-TINGLING BREAKTHROUGH

Working with distressed Nyoongar families to identify what’s limiting their engagement with mainstream services.

Dr Michael Wright

PIPELINE BIG WIN FOR OUR LITTLE PATIENTS

The race to find a drug that will increase survival rates for babies with leukaemia.

Dr Rishi Kotecha with Jackson

FOR IMPACT. RHEUMATIC HEART DISEASE Teaming up with leading health organisations from around Australia and sharing expertise and knowledge to end RHD in this country.

Professor Jonathan Carapetis with Laqueisha

Our IMPACT Report provides a snapshot of research at Telethon Kids and how it is making a difference. You can request a hard copy by emailing us at [email protected] or phone 08 9489 7777. Or download it now at telethonkids.org.au

ANNUAL REPORT 2016 | 11 12 | TELETHON KIDS INSTITUTE PHILANTHROPY

he most recent NAB Charitable Giving Index of child health and medical research within the confirmed that 2016 was a difficult year state. for most charities across Australia. Western T For now, the Institute is honoured to have Australia had negative growth in charitable giving relationships with many of those who give to (-2.2 percent) due to a weakened economic health and medical research. The Institute’s environment. And, medical research charities had philanthropic partners – whether individuals, the lowest market share in WA, with just 3 percent families, foundations, corporates, civic groups, of total donations (humanitarian services had the or schools – demonstrate a shared vision and highest at 33 percent). commitment that is humbling and inspiring. Against this backdrop, Telethon Kids fared well in For example, they help the Institute directly one respect and less well in another. Donations address childhood cancer, infectious diseases, from individuals, foundations and corporates autism, teen depression, allergies, cystic fibrosis, increased by 5.6 percent. When combined rare diseases, asthma, early child development, with bequests, the increase in contributions was nutrition, aggression, fetal alcohol spectrum 19.6 percent. The Institute found, however, that disorders, and other urgent health issues in WA. individuals who normally give up to $200 per Donors are crucially important collaborators in annum found it financially difficult to do so in 2016, addressing these issues. resulting in a (hopefully temporary) 25 percent decrease in their numbers. All donors, no matter their individual levels of giving, are equally important to the Institute. It The Institute is heavily reliant on philanthropy is not by accident the Institute chose the light which accounts for some 32 percent of its income. spectrum as its device for recognising donors In light of this dependence, the Institute would within publications and on its donor board. Here, benefit from an increased understanding of the donors and their respective levels of contribution impact and importance of health and medical are organised by colours of the spectrum (red, research to WA. orange, yellow, green, blue, indigo, violet). The Child health and medical research saves and message is that even as all bands of a spectrum improves lives beyond measure. Our research are essential to the whole of producing light, so helps to prevent children from becoming seriously too are all bands of donors essential to supporting unwell – a noble ambition in itself. Should these the Institute. children be admitted to hospital, or seen at a The Institute is grateful for and cherishes the local clinic, our research helps to ensure they relationships it has with its donors, engaging with have the best treatments and cures available. The them throughout the year personally and as a Institute’s research has the potential to change group. In the tough economic year that was 2016, the world for children and their families. these relationships sustained the Institute, and they It can also change the world for the adults these will again in 2017. children will become, as most of the chronic diseases of adulthood have their origins in childhood. There are thus powerful economic as Tim McInnis well as social reasons to promote the importance Head of Philanthropy

ANNUAL REPORT 2016 | 13 DONOR

Channel 7 Telethon BHP Stan Perron

For a quarter of a century, In 2014, BHP made a five-year Never before in Western Channel 7 Telethon has made financial commitment to be the Australia has a single individual an annual grant to Telethon Institute’s “strategic partner”. made as great an impact to the Kids Institute that has been the They are providing the amount overall health and wellbeing Institute’s lifeblood. Telethon’s necessary for the Institute to of children as has Stan Perron. early support formed a chrysalis make a strategic, capacity- Over the years the Perron for the Institute, allowing us to enhancing investment that Charitable Foundation has fully emerge as a child health enables us to provide the very provided substantial funding and medical research institute best research required by support to Telethon Kids Institute of international renown. We now WA’s children. Now, more than and to our collaborating flourish because of Telethon’s halfway through the five year partners – Perth Children’s annual commitment which, on partnership, the Institute has Hospital and Cystic Fibrosis behalf of the Western Australian been able to retain and recruit WA, for example. In 2016, Mr community, helps us cover the world-leading scientists and a Perron made gifts to support the total costs of research that we top professional services cadre Institute’s work in personalised are unable to obtain from other while making improvements medicine for children, cystic sources. Being an independent in such research platforms as fibrosis research, and in research institute is not without bioinformatics, biostatistics, Aboriginal child health research its challenges, yet we are pre-clinical and clinical trials in the Kimberley. As well, Mr undeterred in our commitment support, and bioresources. Perron and his family annually to change the world for the BHP’s support extends beyond support a select number of children of WA and beyond. transforming the Institute into an PhD students whose research We are immensely grateful to ideal research environment. It is being supervised by the have Telethon as our principal also incorporates an initiative to Institute’s scientists. benefactor. encourage paradigm-shifting research by the Institute’s researchers with a “Blue Sky” awards program, and an initiative to make fetal alcohol spectrum disorders history in the Pilbara.

14 | TELETHON KIDS INSTITUTE CHILDREN’S Leukaemia & Cancer Research Foundation (Inc.)

Wesfarmers Minderoo Foundation Children’s Leukaemia and Cancer Research Foundation The Institute has with Wesfamers The Minderoo Foundation established the Wesfarmers has shown real leadership (CLCRF) Centre of Vaccines & in establishing CoLab at the It is highly likely that without Infectious Diseases which Institute. CoLab is a State-wide the consistent support from brings together researchers collaboration that focuses CLCRF over three decades, from throughout the State to on encompassing vulnerable there would not be a Telethon deliver preventative strategies children 0-5 years of age with Kids Cancer Centre today. against infectious diseases, the developmental resources The CLCRF’s contribution over as well as new vaccines and in the home and community that period of time has been diagnostic tests. Now in its that they need in order to be some $30 million and has fourth year, the Wesfarmers able to thrive by the age of underpinned the development Centre is conducting research five. Research conclusively of a comprehensive Cancer of global relevance at a pace shows that children who are not Centre at Telethon Kids that that would not have been given strong developmental includes research programs in possible without the support of foundations in their earliest leukaemia, brain tumours, rare Wesfarmers. With their help, we years are more likely to grow solid tumours, drug discovery, are effectively addressing the into adults who struggle and prevention. These programs under-immunisation of children due to underachievement are founded on a collaborative in WA (particularly with respect in education, physical and ethos between scientists and to Aboriginal children), too mental health problems, oncologists at Perth Children’s many of whom die from vaccine unemployment, and criminal Hospital, spanning such preventable deaths or develop activity. CoLab is an exciting areas as genetics, molecular resultant chronic diseases in later initiative that brings together biology, systems biology, life. families, clinicians, educators, immunotherapy, radiotherapy, policy makers and other surgery and epidemiology. practitioners and researchers to CLCRF’s remarkable legacy work together to ensure young is relatively unknown to children in Australia Western Australia in light of the develop in order to Foundation’s desire for a low thrive. public profile and insistence that the focus remain on children with cancer. We know, though, that those very children and their families would want CLCRF to know of their deep gratitude.

ANNUAL REPORT 2016 | 15 BOARD OF DIRECTORS PAGES 6-7

CHAIR JOHN LANGOULANT AO AND WHAT INSTITUTE WE DO LEADERSHIP TEAM

DIRECTOR Jonathan Carapetis

as at June 2017

ABORIGINAL ABORIGINAL HEALTH RESEARCH FOCUS AREA HEALTH Head, Glenn Pearson

Aboriginal Health is a Research Focus Area that aims to improve the health and wellbeing of Aboriginal children and families. KULUNGA ABORIGINAL RESEARCH DEVELOPMENT UNIT This is an overarching priority for every Research Focus Area at the Institute. As there are specific cultural, social and economic contexts that require more specialised investigation in collaboration and consultation with Aboriginal families, this Research Focus Area is unique in that it provides advice, technical and cultural support across the Institute to all programs of research. TELETHON KIDS KIMBERLEY

BRAINBRAIN & BEHAVIOUR AND EARLEARLYY ENVIRONMENT RESEARCH FOCUS AREA ENVIRONMENTRESEARCH FOCUS AREA BEHAHead, StephenVIOUR Zubrick Head, Deborah Strickland IMMUNITY & INFLAMMATION RESEARCH PROGRAM DEVELOPMENT & EDUCATION RESEARCH PROGRAM Anthony Bosco Rebecca Glauert ALLERGY & INFECTIOUS DISEASE RESEARCH ABORIGINAL HEALTH & WELLBEING Belinda Hales Glenn Pearson CHILD ALLERGY AND IMMUNOLOGY RESEARCH Debbie Palmer BIOSTATISTICS Nicholas de Klerk EXPERIMENTAL IMMUNOLOGY Deborah Strickland CHILD HEALTH, DEVELOPMENT & EDUCATION HUMAN IMMUNOLOGY Sally Brinkman

TEAMS Patrick Holt

TEAMS HEALTH PROMOTION & EDUCATION INFLAMMATION Donna Cross Prue Hart SYSTEMS IMMUNOLOGY LINKED ANALYTICS & SOCIAL POLICY Anthony Bosco Rebecca Glauert INFECTION & VACCINES RESEARCH PROGRAM DISABILITY RESEARCH PROGRAM Hannah Moore Andrew Whitehouse EAR HEALTH Deborah Lehmann ALCOHOL AND PREGNANCY & FASD RESEARCH James Fitzpatrick, Roslyn Giglia GROUP A STREPTOCOCCAL AND RHEUMATIC HEART DISEASES AUTISM RESEARCH Jonathan Carapetis Andrew Whitehouse INFECTIOUS DISEASE IMPLEMENTATION RESEARCH TEAMS CHILD DISABILITY Tom Snelling Helen Leonard, Jenny Downs TEAMS INFECTIOUS DISEASES EPIDEMIOLOGY MENTAL HEALTH & YOUTH RESEARCH PROGRAM Hannah Moore RESEARCH FOCUS AREAS Francis Mitrou VACCINE TRIALS GROUP Peter Richmond ABORIGINAL MENTAL HEALTH & DEVELOPMENTAL ORIGINS OF CHILD WELLBEING - LOOKING FORWARD HEALTH RESEARCH PROGRAM Michael Wright Roz Walker HUMAN CAPABILITY THE ORIGINS TEAM Steve Zubrick, Francis Mitrou, Cate Taylor Susan Prescott

TEAMS ABORIGINAL MATERNAL HEALTH AND CHILD YOUTH HEALTH & WELLBEING DEVELOPMENT

Donald Payne TEAMS 16 | TELETHON KIDS INSTITUTE Roz Walker BOARD OF DIRECTORS ALEX BROWN JONATHAN CARAPETIS JEFF DOWLING JOZEF GÉCZ PAGES 6-7

MICHAEL McANEARNEY JIM McGINTY AM NICOLE O’CONNOR ROHAN WILLIAMS

DIRECTOR OF COMMUNICATIONS & HEAD OF HEALTH PROMOTION & HEAD OF CHRONIC & SEVERE CO-HEAD OF BRAIN TUMOUR DEVELOPMENT EDUCATION RESEARCH DISEASES RESEARCH FOCUS AREA RESEARCH INSTITUTE Elizabeth Chester Donna Cross Elizabeth Davis Raelene Endersby LEADERSHIP COMPANY SECRETARY & HEAD HEAD OF ABORIGINAL HEALTH HEAD, INFECTIOUS DISEASE DEPUTY DIRECTOR OF CORPORATE GOVERNANCE & TEAM RESEARCH FOCUS AREA IMPLEMENTATION RESEARCH Graham Hall STRATEGY Glenn Pearson Tom Snelling Kristy Le May

HEAD OF EARLY ENVIRONMENT DIRECTOR OF RESEARCH SERVICES & HEAD OF BRAIN & BEHAVIOUR DIRECTOR OF CORPORATE SERVICES RESEARCH FOCUS AREA INNOVATION RESEARCH FOCUS AREA Nick Wood Deborah Strickland Paul Watt Stephen Zubrick

ABORIGINAL HEALTH PROFESSIONAL SERVICES RESEARCH FOCUS AREA Head, Glenn Pearson DIRECTOR OF DIRECTOR OF DIRECTOR OF Aboriginal Health is a Research Focus Area that aims to improve the health and wellbeing of Aboriginal children and families. RESEARCH KULUNGA ABORIGINAL RESEARCH DEVELOPMENT UNIT COMMUNICATIONS CORPORATE This is an overarching priority for every Research Focus Area at the Institute. As there are specific cultural, social and economic SERVICES & & DEVELOPMENT SERVICES contexts that require more specialised investigation in collaboration and consultation with Aboriginal families, this Research Focus INNOVATION Area is unique in that it provides advice, technical and cultural support across the Institute to all programs of research. TELETHON KIDS KIMBERLEY Elizabeth Chester Nick Wood Paul Watt

COMMUNICATIONS INNOVATION & FINANCE & EARLY ENVIRONMENT CHRONICCHRONIC & SEVERE DISEASES AND COMMERCIALISATION PROCUREMENT RESEARCH FOCUS AREA RESEARCH FOCUS AREA CONSUMER & Head, Deborah Strickland SEVEREHead, Elizabeth DISEASES Davis COMMUNITY RESEARCH FACILITIES INVOLVEMENT DEVELOPMENT INFORMATION IMMUNITY & INFLAMMATION RESEARCH PROGRAM CANCER RESEARCH PROGRAM DEVELOPMENT RESEARCH TECHNOLOGY Anthony Bosco Paul Watt, Terrence Johns GOVERNANCE & PEOPLE & CULTURE ALLERGY & INFECTIOUS DISEASE RESEARCH BRAIN TUMOUR RESEARCH PLATFORMS Belinda Hales Raelene Endersby, Nick Gottardo CHILD ALLERGY AND IMMUNOLOGY RESEARCH CANCER EPIDEMIOLOGY Debbie Palmer Elizabeth Milne EXPERIMENTAL IMMUNOLOGY CANCER IMMUNOLOGY Deborah Strickland Jason Waithman HUMAN IMMUNOLOGY TEAMS DRUG DISCOVERY UNIT TRANSITION, Patrick Holt RISK AND COMPLIANCE Paul Watt NEW BUILDING INFLAMMATION LEUKAEMIA & CANCER GENETICS Prue Hart Ursula Kees SYSTEMS IMMUNOLOGY Anthony Bosco DIABETES & OBESITY RESEARCH PROGRAM Shelley Gorman INFECTION & VACCINES RESEARCH PROGRAM Hannah Moore CARDIOMETABOLIC SUNHEALTH Shelley Gorman TOTAL TOTAL EAR HEALTH DIABETES AND OBESITY RESEARCH Deborah Lehmann

TEAMS Tim Jones, Liz Davis GROUP A STREPTOCOCCAL AND Staff Students RHEUMATIC HEART DISEASES GENETICS & RARE DISEASES RESEARCH PROGRAM as at Dec 2016 during 2016 Jonathan Carapetis Timo Lassmann INFECTIOUS DISEASE COMPUTATIONAL BIOLOGY IMPLEMENTATION RESEARCH Timo Lassmann Tom Snelling GENETICS & HEALTH INFECTIOUS DISEASES EPIDEMIOLOGY

TEAMS Jenefer Blackwell Hannah Moore VACCINE TRIALS GROUP RESPIRATORY HEALTH RESEARCH PROGRAM Peter Richmond Alexander Larcombe DEVELOPMENTAL ORIGINS OF CHILD AIRWAY EPITHELIAL RESEARCH HEALTH RESEARCH PROGRAM Anthony Kicic Roz Walker CHILDREN’S LUNG HEALTH THE ORIGINS TEAM Graham Hall 410 159 Susan Prescott P4 RESPIRATORY HEALTH FOR KIDS

ABORIGINAL MATERNAL HEALTH AND CHILD TEAMS Stephen Stick DEVELOPMENT RESPIRATORY ENVIRONMENTAL HEALTH Roz Walker Alexander Larcombe ANNUAL REPORT 2016 | 17 FINANCIALS

Our financial position in 2016

he Institute achieved a greater than anticipated financial result for 2016 (profit from ordinary activities of approximately $7.5 million). This was an unexpected outcome which resulted as a consequence of T the following non-routine inputs:

1 Receipt of approximately $2.2 million in bequests. Bequests are an uncommon source of income for the Institute. With the unexpected receipt of these funds, our Board determined to fund the strategic recruitment of one of Australia’s pre-eminent cancer researchers, Professor Terry Johns, for a five-year period. Professor Johns will lead the Institute’s new Children’s Cancer Centre. Australian Accounting Standards required the funds to be recognised on receipt in the Profit and Loss.

2 Approximately $3.4 million in funds that were held on the Institute’s Balance Sheet as “deferred income” were re-classified by our auditors as income earned during 2016 and transferred to the Statement of Profit and Loss following a comprehensive review of our Work in Progress balances. These funds had already been committed to additional child health research activities outside of the Institute’s normal operational budget.

Not taking into account the abovementioned uncommon items, the Institute’s underlying operating profit for 2016 was$1,844,434.

Finally, it is relevant to highlight that there was a reduction in cash held by the Institute as at the end of the 2016 financial year by $2,464,625. This reduction in cash reserves represents a continuation of the Institute’s focus on expending accumulated funds in pursuit of specified research objectives as per our Strategic Plan.

18 | TELETHON KIDS INSTITUTE TOTAL INCOME $60.5M TOTAL EXPENSES $53M

Public Income - Scientific Grants % Research % $12,959,922 21.4 $36,940,220 69.6

Public Research platforms, Income - % research support Contracts 8.3 & infrastructure % $5,039,095 $16,138,840 30.4

Private & Not For Profit Income - % Grants 19.4 $11,764,525

Private & Not For Profit Income - % Contracts 8.7 $5,246,439

Sponsorship and Donation % Income 27.9 $16,906,209

Private & Not For Profit Income - Grants Bequests Public Income - $2,239,134 % Private & Not For 3.7 Grants Profit Income - Contracts Public Income - Contracts Commercial Income Sponsorship % Investment Returns $378,764 0.6 and Donation Income Bequests Commercial Income Other Income Investment Returns % $4,544,587 7.5

Other Income % $1,506,193 2.5

ANNUAL REPORT 2016 | 19 For further information about donating to the Telethon Kids Institute, subscribing to our mailing list or joining us for a tour of our facilities please contact us on: T | 08 9489 7777 E | [email protected] W | telethonkids.org.au

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