breakthrough Annual Report 2016 Message from the Director 2 Year at a glance 4 Manifesto 6 In brief 8 In the blood Creating blood stem cells in a dish. 10 Gut reaction 30 years Why a healthy immune system requires exposure to a wide range of germs. 12 Turning research into reality MCRI’s engine room of discovery. 14 The perfect pair Combining peanut protein with a probiotic. 16 The future is here Exome gene sequencing gives families answers. 18 of life Thank you – donors 20 A brilliant mind Introducing Professor John Christodoulou AM. 22 MCRI rising stars Students Sophia Frentz and Alex Sexton-Oates share their motivation and inspiration. 24 Landmark Lancet A turning point for adolescence. 26 changing Early birth blues Depression and anxiety among parents of premature babies. 28 The alcohol taboo Delving deep into the unanswered questions around drinking alcohol in pregnancy. 30 Your support You showed your support in many discoveries and varied ways in 2016. 32 Financial position and cash flows 36 Message from the Chairman 40

Published June 2017

Research by Professor Katie Allen’s team contributed to the recommendation that parents 2011 1993 1999 2010 1990 introduce cooked egg into their > child’s diet between four and Professor Andrew Sinclair six months, not 10 months as and team identify the previously directed. sex-determining gene SRY. MCRI moves into its The discovery attracts A trial of rotavirus vaccine new world-class worldwide media attention The Institute’s focus on developed by MCRI facility, co-located with and finally provides an Menkes syndrome culminates researchers, RV3, found The Royal Children’s answer to one of our most in the co-discovery of the immune system was Bill and Melinda Gates Foundation Hospital. The facility fundamental questions the Menkes gene led by successfully stimulated award $1.4 million to MCRI to help was oficially opened – what makes us male or Professor David Danks and and therefore protected combat childhood pneumonia by by Her Majesty Queen 1986 female? Professor Julian Mercer. against the virus. improving pneumonia vaccines. Elizabeth the next year.

Landmark study by Professor The Murdoch Institute The Murdoch Institute for Research Victorian Infant Hearing Kerr Graham proves the safety and The Royal Children’s in Birth Defects founded by Screening Program and efectiveness of Botulinum Hospital Research

Professor David Danks with support established - one of 1994 1992 2000 1986 toxin A – Botox – for children Institute merge to form from Dame Elisabeth Murdoch the first whole-of-state with cerebral palsy. the Murdoch Children’s and her family, Sir Jack Brockhof, screening programs in Research Institute (MCRI). the Scobie and Claire Mackinnon the world to detect Trust, the Miller family and others. congenital hearing loss. It quickly becomes a world-class centre of genetics research and clinical genetics services. Victorian Clinical Genetics Services, an amalgamation of clinical genetics services and genetic pathology laboratories, is established. It is a wholly-owned subsidiary of MCRI.

Research led by > Professor Katie Allen A clinical trial led by discovers low levels of Professor Mimi Tang 2011 2012 2015 2013 Vitamin D in infants with finds 82 per cent of Australia-born parents children involved in the is linked to an increased study with a peanut risk of food allergy. allergy can tolerate

> peanut after treatment The Fontan registry is with a probiotic taken in conjunction with established by Associate Professor Yves d’Udekem. peanut protein. The Registry collects MCRI Patron Dame health information on Elisabeth Murdoch Professor Kathryn North Fontan patients living in passes away on joins MCRI as its new Australia and New Zealand. December 5th. director. 2016

Rupert Murdoch A study shows that Professor Ruth Bishop > The Australian Genomics Victorian Clinical contributes a behavioural sleep awarded the CSL Florey Adults conceived Health Alliance (AGHA), a Genetics Services $10 million grant techniques, known as Medal for her lifetime’s through IVF and other national network of 47 partner celebrates 50 2012 2015 2014 on behalf of his “controlled comforting” work on rotavirus. assisted reproductive organisations, led by Professor 2016 successful years of family to MCRI. and “camping out”, are > technologies have Kathryn North and Professor newborn screening an efective way to help mostly grown up as Andrew Sinclair is established. in Victoria and MCRI infants sleep better healthy individuals, celebrates its 30th

and reduce mothers’ an MCRI study finds. anniversary. Professor Melissa Little leads a depression levels. research group that successfully grows a ‘mini kidney’ from stem cells in a dish.

The Melbourne Children’s Trials Centre is established. message from the director executive committee 2016

Chair: Professor Kathryn North Professor Katie Allen Professor Vicki Anderson Professor John Bateman Professor Andy Giraud Professor David Thorburn Professor Andrew Sinclair Dr Leanne Mills Mr John Dakin Dr James Dromey

It is my pleasure to share our in digital technologies together with medical Our scientists work alongside two Your generosity changes lives and brings science to make healthcare more accessible heavyweights in child health and academic hope to children, families and communities. 2016 annual report with you. and we’re leading the way for disadvantaged leadership – the Royal Children’s Hospital This is an achievement we can all be proud children both locally and abroad. and University of Melbourne Department of. Thank you for all of your contributions. As Director of this When I walk the corridors of the Institute, of Paediatrics are just metres from our labs. It has been a joy and a privilege to lead the remarkable institution, I’m I am inspired by the shared sense of unity, The joint focus on collaboration and Murdoch Children’s Research Institute in purpose, and excitement about the potential translation is second to none, and discoveries 2016, and I’m exhilarated when I think about immensely proud of the of discovery shared by the MCRI community. quickly convert into practical treatments for what we will discover next. children in hospital and the community. people I lead and the work MCRI had a remarkable year in 2016 – we have achieved at MCRI. the year we celebrated 30 years of life- changing discoveries at the Institute. In It works the other way as well. Our research the following pages, we share with you leaders are all university academics and enthusiastically train and mentor the next This is a group of more than 1,500 curious some of our most exciting highlights and and clever scientists, clinicians and achievements, including: generation of researchers. Many of our scientists are also clinicians, and they are able administrative staf, who strive day after • The discovery that we are well on the way Professor Kathryn North to use research to solve problems that arise in day to discover new knowledge that can, to creating the right type of blood stem their daily work with children and families. and does, make a diference to children, cells in the lab to potentially treat blood adolescents and their families. diseases and leukaemia; All of this would not be possible without At MCRI we tackle the toughest issues • A new partnership forged with investors vital funding from state and federal afecting children’s health, so every child to accelerate the development of a life- governments, including the National Health can live a healthy and fulfilled life, and changing treatment for peanut allergy, and Medical Research Council. communities can prosper. developed here at MCRI; It is our vision to solve the challenges faced • How we are finding more answers The legacy of Dame Elisabeth Murdoch by the rise in epidemics that are increasingly than ever before for children with rare, lives on through the trusts, foundations common among our children: allergy, obesity, unexplained illnesses through cutting- and individuals who generously gave us cancer, learning problems, depression and edge genomic testing. more than $16 million to help us continue anxiety. And it is our goal to ensure we live in We have received support from federal and to fight the most troubling health issues a world of wellness rather than illness. state governments, grant funding bodies, afecting children. We are especially To achieve this, we are focusing on venture capitalists, and donors who value grateful for the continued support of the prevention and early intervention, rather research and innovation as much as we do. The Royal Children’s Hospital Foundation than waiting for disease and trying to treat it. This has been instrumental in the advancing who provided funding to some of our most We are pushing the boundaries by investing our ability to deliver our research. innovative research projects.

2 3 year at a glance $130.1m Total revenue $35.88m National Health and Medical Research grants $11.79m International grants $71.8m Total competitive funding $16.06m Donations, fundraising and bequests 951 Peer reviewed publications 1,719 Media mentions 1,181 People Pictured: Harry and James

4 5 Pictured: Benjamin

We believe that for every question there’s an answer. For every child’s illness there must be a cure. For every obstacle there must be a way around. What inspires us is asking the big questions – Why is it so? Why does it happen? How can we fix it? What excites us is tackling the big issues afecting children’s health. Children are at our heart, in our blood, and in our bones. We believe that every child deserves a healthy start to life. And a happy and prosperous community needs healthy children. We believe in the power of curiosity, cleverness and cutting-edge research. We are excited by discovery and new knowledge to make a diference. The future is purchased by the present, we can shape the future, we can change the world. So every child can have a childhood. So every child can grow to reach their full potential. Children are at the heart of everything we do.

6 7 1. 2. 4.5. 6.

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3. 4. 67

in brief

Leading researchers recognised Stomach cancer breakthrough Stopping antibiotics sooner Stamping out cancer Digital health solutions New Fiji vaccines Growing mini-kidneys in a dish is the Helicobacter pylori (H. pylori) is a bacteria Antibiotic resistance is a global crisis Childhood cancer survival rates have A virtual reality game that transports Fijian children will now have healthier next frontier in medical research. acquired during early childhood which – and MCRI researchers are part of the increased dramatically over the past 60 sick children from their hospital beds futures following the introduction of It’s unchartered territory and opens the infects roughly half the world’s population. international efort fighting this worrying years, from virtually zero to 80 per cent. to imaginary worlds is one of the two three new vaccines to tackle pneumonia, door to safely test new drugs for kidney It triggers inflammation in the stomach trend. Associate Professor Penelope But what if we could increase this rate to winners of MCRI’s inaugural digital health diarrhoea and cervical cancer. The vaccines, disease, cell therapy and could even lead lining and while it’s harmless in 85 per Bryant, a Clinician Scientist Fellow, led a 100 per cent? MCRI is part of a national technology award, Bytes4Health. Virtual introduced with the assistance of MCRI to bioengineering kidneys for transplant. cent of cases, it can cause ulcers and review which recommended shortening group aiming to achieve just this. The reality company Phoria is exploring the and the Australian government, have had It’s no wonder this headline-grabbing stomach cancer in the remaining 15 per the courses of antibiotics in children, Zero Childhood Cancer Initiative strives scientifically-proven therapeutic benefits a significant impact on reducing these research won Professor Melissa Little cent of people. Dr Treve Menheniott led when appropriate, to help fight resistance. to completely eliminate any child deaths of the technology to help sick children life-threatening diseases in Fiji. More than and her team one of the most prestigious research which found a particular protein, The review, published in Lancet Infectious from cancer. MCRI is collaborating with the cope with pain and anxiety. “There’s good 90 per cent of all children were vaccinated science awards of 2016, the Australian called GKN2, is “switched of” in people Diseases, looked at 36 common bacterial Victorian Comprehensive Cancer Centre on evidence that the distraction provided by under the program, run by the Fiji Ministry Museum Eureka Prize. Also nominated as a with stomach cancer, suggesting that it infections in children requiring antibiotics this initiative, which received $20 million in virtual reality is good for pain management of Health. The pneumococcal immunisation finalist in the infectious diseases category might protect against H. pylori infection and found many traditional courses are federal funding in 2016. The initiative and reducing anxiety,” said Phoria’s targets pneumonia, severe blood infections was Associate Professor Andrew Steer for and related stomach cancer risk. The too long, keeping children in hospital aims to create a national personalised Trent Clews De-Castella. A disposable (sepsis) and infection in the brain (meningitis). his work in the Pacific controlling scabies, team showed in the lab that genetically unnecessarily and leading to resistance. medicine program for babies, children device that clips onto a smartphone to The rotavirus vaccine prevents life- a terribly itchy skin disease that can become engineering GKN2 to normal levels The evidence suggested switching from and adolescents with high-risk cancers digitally examine skin lesions, by company threatening diarrhoea in children and infected and lead to deadly diseases of the significantly inhibited tumour growth. intravenous to oral antibiotics could happen that typically have poor outcomes. SkinView, was the second recipient. the human papillomavirus vaccine (HPV) kidneys, heart and blood. This work won These results have exciting implications earlier than previously recommended If fully implemented, it would allow every Associate Professor Andrew Steer will protects young girls against cervical A/Prof Steer two accolades from the Heart for the future of stomach cancer treatment. for some infections. A/Prof Bryant said newly-diagnosed paediatric cancer be the first MCRI researcher to test the cancer. MCRI’s analysis found hospital Foundation – the Future Leader Fellowship, Diseases caused by H.pylori are treated the study has helped to form national patient in Australia with a hard-to-treat benefits of this technology in the field, admissions for pneumonia in children under recognising him as one of the best with antibiotics to prevent stomach cancer, guidelines around the duration of IV and disease to have their therapy tailored to with his work with infectious skin diseases five almost halved, from about 1000 to cardiovascular researchers and the Paul however some strains of the bacteria oral antibiotics for children with bacterial the tumour’s genetic characteristics. like scabies, in the Pacific region. The 500 each year, while those for meningitis Korner Innovation Award, given to the most are becoming antibiotic-resistant. infections. “Antibiotics are prescribed for “This is a really important initiative, as it will device’s portability and cost-efectiveness and invasive pneumococcal disease also innovative research projects. A/Prof Steer Dr Menheniott’s findings could boost most children. We have provided practical drive personalised medicine for childhood are part of its appeal in lower-income dropped. The number of children carrying was recently promoted to lead the Infection eforts to find new ways to combat and evidence-based advice on when cancers,” said Associate Professor Paul countries. Phoria and SkinView both the pneumococcal germ declined in all age and Immunity theme at MCRI while Prof stomach cancer. doctors can shorten courses of antibiotics Ekert. “This will enable us to treat the most received $25,000 and the opportunity groups. This should reduce diseases from Melissa Little now heads up Cell Biology. to help in the fight against resistance.” dificult childhood cancers and maximise to work alongside MCRI researchers to these bugs and mean fewer children die or the chances of finding cures, while reducing develop their digital health technologies. sufer brain damage and disability, which is the toxicity of treatments. We can do this common in children who survive meningitis. by ‘reading’ the genetic code of the tumour Rotavirus diarrhoea admissions declined by to tailor the treatment to that child.” 70 per cent in children under five.

Pictured: 1. Professor Melissa Little. Pictured: 5. Associate Professor Paul Ekert. 2. Dr Treve Menheniott. 3. Associate 6. Phoria’s winning virtual reality technology Professor Andrew Steer and Julius. (L-R Gemma and Stella). 7. Fijian children. 4. Associate Professor Penelope Bryant (Photo: MM2008)

8 9 in the blood

Developmental and stem cell biologists Professor Andrew Elefanty and Dr Elizabeth Ng are partners in work and life. In 2016, they published an important paper on the creation of blood (haematopoietic) stem cells in a dish in the journal Nature Biotechnology. The researchers hope their work will lead to new treatments for childhood blood diseases and cancers including leukaemia. The Pictured: Dr Elizabeth Ng and Holy Grail will be creating the correct ‘magic cell’ in large Professor Andrew Elefanty enough quantities for transplantation into humans.

Dr Elizabeth Ng when the children were little. He’s got my stem cell will be very valuable because Professor Andrew Elefanty of blood cells has been the main theme and good dancer. I can just play well Andrew and I met at WEHI (the Walter and back. I’m extremely poor at doing things everyone knows what to do with it once I met Elizabeth when she applied for a job and that’s still what we work on. You start enough to accompany some of the Eliza Hall Institute) in 1998 and have been that take me away from the bench when I’m we’ve got it. It will help us treat human at WEHI in 1998. We’ve worked together with a stem cell and in the laboratory (Flamenco) dance classes. on the trail. He sighs and says, “I’ll do that. disease — it will be the magic cell that will you take that cell through similar together ever since. It was one of those since at WEHI, Monash University and In a way she’s is a bit like a Renaissance You get back into the lab.” enable us to study leukaemia or any other developmental stages to those it would go things. We met on the job. We both loved MCRI. We’ve lived together for many woman. She’s incredibly widely read. blood disease. through as an embryo. That’s where we are the science. We didn’t actually bother Andrew is very good with a microscope. years, even though we only got married She is passionately interested in history, really making progress. The ultimate goal getting married until 2012 at which point the I’ll say, “I need a research assistant”. I love to read and garden. I love Flamenco four years ago. All the children were there. gardening, cooking, the arts, as well as is to make transplantable blood stem cells children said, “About bloody time you two!” He doesn’t mind helping me with the work. dancing, yoga and the occasional spot of They all dressed up and they definitely science. I think you see this in some very that would provide a direct, therapeutic I have two girls and he has two boys (Sarah, Although he is the lab head, I can say “here, belly dancing. I love Flamenco’s unique outshone us, they looked gorgeous. I was clever people. She would have been quite outcome to treat patients who need stem 24, Isabella, 26, Matt, 26, and James, 29.) quick, take over this bit of the experiment integration of singing, guitar and dance. incredibly jealous of them. at home back in the time as a female cell transplantation – if they don’t have an They grew up together and are very close. now because I need to do such and such The dancer follows the singer but the Leonardo. In terms of the science, she At first we worked closely together and existing perfect match – as part of their They share the same circle of friends. with the rest of the experiment.” And he’ll guitarist follows the dancer. Andrew plays has a real feel for it. She’s certainly the that always worked fine, we never had treatment for leukaemias or other blood do it. We team up at the bench when we guitar at some of my classes so now it is best person I know who can manage and Working together is actually really good. any periods of friction or arguments. diseases. We could also model blood need to, to get stuf done. his turn to follow me! look after cells. She’s probably one of We have quite separate roles. Andrew is the Over the years our roles have become more diseases in children and adults to help us the best, if not the best person who can big picture man. He was an oncologist – and Ever since day one of working together, separate. I spend more time in the ofice understand what things have gone wrong diferentiate human stem cells. She is a very good one – and went into research, I’ve been able to think out loud, air ideas and Elizabeth still spends a lot of time in the and look at diferent or new treatments. a most interesting person. whereas I am purely science. He runs the and discuss things very openly. That is laboratory. I still run the flow cytometer or We went to Spain about three years ago. whole blood project and I get the stuf to extremely valuable in an area of work that the confocal microscope for many of our I took some guitar classes and Elizabeth work - I’m good with the cells. is very competitive. experiments. I think it’s very helpful to stay did Flamenco dance classes. Flamenco in touch with the primary data, to still know Andrew’s fabulous. He’s extraordinarily In a nutshell, I want haematopoietic (blood) guitar is great because it’s technically what the results look like. intelligent and he’s got a memory like a steel stem cell in a dish. Our 2016 success was very challenging and rhythmically very trap. When I’m on the experiment trail, I’m creating the region of the embryo that gives The projects we’ve worked on since the complicated. That’s been fun to do over the on the trail. I will do many things at once rise to blood stem cells. We think we are beginning have involved the diferentiation last few years. I’m definitely not a dancer, and work long hours – more so now than almost there. Creating the haematopoietic of pluripotent stem cells. The development never will be! Elizabeth is a very passionate

10 11 Professor Katie Allen’s team are unravelling the mystery around why food allergies are on the rise in Australia and around the world.

The key findings of this ground-breaking research support the so-called ‘hygiene hypothesis’ – that the developed world has changed our relationship with bugs, both good and bad, and this has led to an immune-system backlash. The immune system needs exposure to a wide variety of germs so it learns to attack bad bacteria gut and viruses and ignores what should be harmless things, like foods. The Five Ds Diet, dogs, dribble, dry skin and Vitamin D are the Five Ds identified by Prof Allen and her team to explain Australia’s high food allergy rates. Diet relates to the finding that delaying the reaction introduction of allergenic solid foods like peanut and egg beyond the first year of life may actually increase the likelihood of developing allergies to these foods, while giving them in the first year of babies’ lives may be protective. Why a healthy immune Having a dog or siblings (dribble) – and system requires exposure therefore more exposure to bacteria in to a wide range of germs the home – is not necessarily a bad thing for kids’ immune systems because these children were less likely to have allergies. Another similar finding was that when babies’ used dummies that had been dropped on the ground, their risk of allergy was lower. Low Vitamin D levels are suspected to play a role, too, according to another study. Dry skin refers to an eczema gene that has been found to increase the risk of food allergy. In 2016, we found another clue – migration Children born in Australia to Asian parents are three times more likely to develop nut allergy than non-Asian babies, according to our research findings released early in 2016. But children born in Asia, who migrate to Australia, appeared protected. These results, from a study of 57,000 five- year-olds, suggest the Asian environment somehow protects against food allergy. However Australian-born Asian children, possibly because they have been exposed to a diferent diet, bacterial and UV environment, are at much higher risk of developing food allergies. Our research changed infant feeding advice At MCRI, we coordinate the Centre for Food and Allergy research, a national alliance of paediatric food allergy researchers and clinicians. Infant feeding guidelines have now been changed across all these participating organisations following our research findings. It is now recommended Pictured: Professor Katie Allen, leader of Population Health and group leader babies are given solid foods around six of Gastro and Food Allergy research, months, but not before four months, while with patient Jenson. continuing breastfeeding if possible.

12 13 turning

MCRI is a massive engine room of discovery. At any one time, there are about 450 research projects underway. This provides research a huge opportunity to turn our scientific breakthroughs into tangible products, treatments and interventions to positively impact child and adolescent health. By commercialising our discoveries we’re creating an incredible legacy that builds into on philanthropic or government funding by generating revenue that can be reinvested reality back into where it is needed most – research.

Curve Tomorrow HeadCheck Bytes4Health ProTa Sleep Well, Be Well Organ Health BMT test HeadCheck is a smartphone app for Curve Tomorrow is a health technology In 2016 MCRI launched its inaugural digital ProTa Therapeutics was formed in September In 2016, Professor Harriet Hiscock’s A new blood test developed at MCRI coaches and families to identify concussion company uniquely embedded at MCRI health technology award, Bytes4Health. 2016 to develop and commercialise an research found that parents who received will allow doctors to better assess symptoms in children. Developed by MCRI since 2012. The group is collaborating The two winners were Phoria, a company exciting allergy treatment developed by behavioural sleep management advice, the success of bone marrow transplants. researchers and Curve Tomorrow, it asks with MCRI on more than 30 diferent digital developing a virtual reality experience for Professor Mimi Tang, which was successfully without a face-to-face consultation, The Organ Health BMT test allows doctors questions about how a child feels after a health products that transform our children’s hospital patients and SkinView, trialled on children with life-threatening were able to improve their children’s to measure whether a bone marrow head injury and suggests the appropriate ground-breaking research into tangible a device which turns a smartphone into peanut allergy. The treatment attracted a sleep problems. MCRI is developing a transplant has successfully engrafted and course of action. products for clinicians, parents, and the a medical-grade lens capable of examining $15 million venture capital investment. digital solution to help parents manage identify rejection or recurrence of disease wider community. skin lesions. behavioural sleep problems in children earlier than existing methods. aged six months to 13 years at home.

14 15 the perfect Peanut allergy is the most common cause of life- Here, Prof Tang gives threatening anaphylaxis in her expert advice children and it can cause about how to best death. Rates over the past manage food allergies. pair 20 years have skyrocketed 1. Always check the ingredients in by more than 350 per cent. any food you are about to eat to ensure it doesn’t contain your That’s why Professor Mimi Tang’s clinical food allergen. Combining peanut trials research to help children develop tolerance to peanut has been embraced 2. Be extra careful when you are protein with a probiotic worldwide and continues to make headlines. eating food prepared by other people, for example, at parties is a masterstroke in The treatment developed by Prof Tang, or restaurants. If you can’t be which involves combining the peanut the quest to cure this 100 per cent sure it is safe, then allergen with a specific probiotic, received don’t eat it. Don’t share food deadly allergy a $15 million dollar boost in 2016 from with other people. venture capital firm, OneVentures. MCRI and OneVentures have set up a biotech company, ProTA Therapeutics, to work 3. H ave an action plan outlining towards making the treatment available what action to take if you internationally. experience an allergic reaction, including the use of an EpiPen if The product has the potential to treat other you have one. food allergies to milk, egg, shellfish and other nuts. ProTA Therapeutics, set up to 4. B e familiar with allergic reaction commercialise the treatment, will explore symptoms, which symptoms are this approach. most serious and how to treat Meanwhile, Prof Tang’s research into the them. Excessive coughing, a longer-term benefits of the treatment is croaky voice, noisy or dificulty continuing. breathing and feeling faint are “Most children don’t grow out of their all signs of a serious reaction that peanut allergy – they have it for life,” need to be treated with the EpiPen. Prof Tang says. 5. It’s a good idea to talk to your “In comparison, most children grow out of friends about your allergies so egg allergy by the time they are teenagers they can help you if needed. or adults.” Unfortunately, even if children are careful there may still be times when food is consumed that contains the child’s allergen and causes an allergic reaction.

Pictured: Professor Mimi Tang, group leader of Allergy and Immune Disorders and co-director of Allergy Translation, with patient Chevy, 6.

16 17 Pictured: Ginger Salisbury with parents Matt and Meg Salisbury. Photo courtesy the David Caird/Herald Sun future is

Exome gene sequencing here gives families answers

Ginger Salisbury was an Ginger to the MCRI-owned Victorian Clinical Exome sequencing uses technology called MCRI leads the Australian Genomic Genetics Services (VCGS) where she was Next Generation Sequencing, which allows Health Alliance, a national network of extraordinarily strong baby, promptly included in a study that allowed all 20,000 genes to be rapidly tested at the clinical, diagnostic and research institutes VCGS tests impressing her parents by all her genes to be rapidly sequenced in same time. with the goal of integrating genomic the search for an answer. medicine into everyday care. rolling from her tummy to “It has improved diagnosis rates for families In February 2016, Ginger – who is now four of critically ill children who may have “Ultimately, we want to see genomic • The VCGS Victorian Newborn • Prenatal diagnosis and pregnancy her back when she was – was one of the first people in Australia previously undergone years of testing sequencing available to all Australians Screening program tests newborns loss (to investigate causes of infertility diagnosed with a very rare disorder called without any answer to the cause of their one month old. But at three who need it,” says MCRI Director Professor for more than 25 conditions. and recurrent pregnancy loss). KAT6A-related syndrome. The condition is illness,” says VCGS laboratory director, Kathryn North. “Personalised medicine months, her early progress characterised by intellectual disability, lack Dr Damien Bruno. through genomic technology is an • Clinical exome sequencing to identify • Other genetic tests for metabolic slowed. of speech, early feeding dificulties, heart “In the past, young children have been incredibly exciting area of healthcare the cause of health and developmental and heart disorders and cancer. problems and distinctive facial features. through an arduous diagnostic odyssey that with huge potential for combatting rare problems. • Paediatric microarrays to The diagnosis, while emotionally dificult to included months or years of invasive blood disease and cancer.” • Percept™ – a non-invasive prenatal investigate the causes of intellectual By five months, her mother Meg Salisbury comprehend, gave the family much-needed tests and painful biopsies. Some waited Meg Salisbury says Ginger’s diagnosis has blood test for chromosome conditions disability, developmental and was seriously worried. Ginger wasn’t meeting answers, a way forward and an international on lists for several years to access genetic improved her prospects and put the family such as Down syndrome, Edwards behavioural concerns such as autism her developmental milestones. And as for support network of other afected families. testing through research trials. sleep, it just never happened. She was awake back in control. syndrome and Patau syndrome. spectrum disorders and congenital Ginger is one of more than one hundred “Now we can provide answers to families for hours at night, prompting her exhausted malformations. children who have now been helped by within weeks and for the most urgent cases, “We feel like we can make a better plan, • Prepair™ – a test to determine parents to pore over sleep books and consult whole exome sequencing carried out at in as little as 10 days. We’ve been able to tailored to her. She starts preschool this whether individuals and couples • Chimerism genetic testing – an experts for answers that were never found. the VCGS. Ginger was able to access the have a huge impact on the lives of seriously year, so the preschool can access funding are carriers of genes for cystic in-house developed and patented Something wasn’t right. revolutionary test through a clinical trial, ill children to prevent them going through to have an extra carer to help with her. fibrosis, fragile X syndrome, and test used to monitor the success of Meg confided in her husband, Matt, and but in 2016 the Institute was one of the the often harrowing diagnostic ordeal in the We are planning to send her through the spinal muscular atrophy. blood stem cell transplantation her mother, a midwife and mother of seven, first in Australia given the green light to first place.” mainstream school system as long as (like bone marrow transplantation). • MSS – (maternal serum screening) before taking action. “You don’t want to be provide the accredited test to children possible,” she says. a blood test for pregnant women to that mother who is over-worried and over- with undiagnosed genetic conditions “We communicate regularly with other determine their chance of having a protective,” she says. referred by their clinician. families with children afected by KAT6A. baby with a chromosome condition, When Ginger was seven months old, the The move means more children will be able Because some of these children are older, such as Down syndrome. Visit vcgs.org.au for more information family’s quest for answers began with a to access the test to find answers without we can see what they are dealing with series of paediatric and maternal health the additional hurdle of waiting for a spot in and plan for that earlier than those families appointments. The paediatrician referred a research study. were able to – that’s a gift.”

18 19 Donors Country Women’s Association – Echuca George & Freda Castan Families Charitable Mr Jeremy Leibler Red Kite The N E Renton Bequest 6A Foundation Country Women’s Association of Victoria Foundation Mr Stanley Stavros & Ms Marisa Leone Mr & Ms Adrian & Christina Redlich (managed by Australian Communities Foundation) Mrs Sue A’Beckett Ms Sharon Cowin Mrs Sonia Gilderdale Mr & Mrs Bori & Helen Liberman Mrs Kerrie Reith The Peter Isaacson Foundation Ajaco Enterprise Pty Ltd Ms & Mrs Andrew & Abigail Cox Mr Dale M Gilmore Mr Justin Liberman & Ms Lisa Farber Rellim Foundation The Pratt Foundation Mrs Antionette Albert Mr Laurence G Cox AO & Mrs Julie Ann Cox Mr & Mrs Nigel & Leora Givoni Limb Family Foundation Ms Jenny Renton The Samuel Nissen Charitable Foundation Mr Charles Allen Mr & Mrs David & Suzanne Craig Mr & Ms Ergad & Roslyn Gold Mr John B Little Mrs Marilyn Rich The SANDEL Foundation Mr Andrew Alston Mr Glynn Cribb Good2Give Ms Denise Livingstone Mr Keith Richards The Sunraysia Foundation Ms Maria Alviar Mr Simon Crowe Ms Lucy Goodacre LJMP Nominees Pty Ltd Mrs Beverley Richardson The Tegmen Fund Pty Ltd Ms Laura Anderson Mr & Mrs Bernard & Georgie Curran Mrs Louise M Gourlay OAM Loreto College Mrs Sue Ritchie The Wolf Foundation Mr Christopher Archibald & Ms Melissa Goode Ms Narelle Curtis & Mr Nicholas Tyshing Mr & Mrs Charlie & Wallis Graham Lower Kinder Gimmel – Mt Scopus College River Capital Foundation Ms Deborah Thomas Ms Emma Auld Customer Service Pty Ltd Mr & Mrs Jamie & Rebecca Gray Mr & Mrs Chris & Tracey Lucas Ms Judy Roach Mr & Mrs Peter & Heidi Tonagh Mrs & Mr Michelle & Marshall Baillieu Ms Debbie Dadon Mrs Cathie Graydon Mrs Christine MacGill Mr Neale Roberts Mr Hans Torv Mr & Mrs Angus & Ariane Barker Mr & Mrs John & Sue Dakin Mrs Elaine Greenhall Macquarie Group Foundation Mrs Judith Robinson & Mr Michael Robinson AO Tour de Cure Mr & Mrs David & Penny Barlow Mr Andrew Dale Mr & Mrs Bruce & Anne Grey Makro Built Mrs Belinda Roper 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20 21 Childhood Fencing I was born in Sydney but my parents People may not know that I am a fencer. are from Cyprus. They came here in the It’s a very physical sport, but there are mid-50s. They are proudly Australian but a lot of mind games involved. maintain their roots with Cyprus.

a brilliant

Toronto Member of the Order of Australia From 1990 to 1992 I lived in Canada and I was awarded the AM in 2010 for my worked at The Hospital for Sick Children services to genetics and in particular in Toronto as a clinical fellow, and also got paediatric genetics. These are my sons, mind some more laboratory experience. Thomas and Callum.

Professor John Born and raised in Sydney, Prof Christodoulou “Over time these girls develop severe Identifying the genetic basis for a child’s obtained his medical degree at the University intellectual disability. If they walked disorder can also help parents plan their Christodoulou AM joined of Sydney. He has led a distinguished or were able to communicate, they lose family. “Restoring reproductive confidence MCRI as the inaugural Chair career, including 18 years as Head of the these abilities and don’t regain it. is a huge gain for families,” he adds. Western Sydney Genetics Program, based It’s devastating,” he says. of Genomic Medicine in at The Children’s Hospital at Westmead. Prof Christodoulou’s life outside work With a colleague, Prof Christodoulou is equally fascinating. He is a fencer – 2016. However, it’s not his His new role, a joint appointment between established the first Rett syndrome and a good one, winning national and first stint at the Institute. MCRI and the University of Melbourne multi-disciplinary management clinic international medals. He took up the Department of Paediatrics, will drive in the country. historical sword-fighting sport during the integration of genomics into clinical He also led a world-first study identifying university, serendipitously as it turns out, Prof John Christodoulou is full of practice on the Melbourne Children’s one of the genetic causes of a syndrome because that’s how he met his wife (she was scoring a bout and “couldn’t surprises. The internationally-renowned Campus and beyond. that overlaps with Rett syndrome and Italy Son’s Wedding geneticist and researcher returned to get my damn name right! Now she’s stuck Prof Christodoulou has witnessed first- investigating the biological basis of the My wife Catherine and I love travelling in My son Thomas married Philippa on MCRI in 2016, the Institute where he with it,” says Prof Christodoulou). He still hand how advances in genetics can benefit disorder. His team is now working on a Italy, especially walking tours. Our favourite December 30, 2016. They are a good fit. first worked from 1986 to 1990 under trains twice a week at the Victorian families with children afected by these potentially promising therapeutic for place to walk is the Dolomites, where this It was a pretty relaxed afair. We are a the mentorship of founder, Professor Fencing Academy at the North Melbourne conditions. One of his main research areas Rett syndrome. photo was taken in 2011. close family. David Danks. Football Club. “I liken it to physical chess,” is Rett syndrome, a nervous system disorder Genetic testing for the syndrome in he says. “In a very short space of time, “At the time, Melbourne was considered mostly afecting females, where babies Australia emerged from his research and you have to work out your opponent’s the place to be to train in genetics and develop normally for about six months gave families some much needed answers. strengths and weaknesses and then use metabolic disorders,” he explains.“ It is before deteriorating. They lose skills they “One of the worst things families had to deal them to your advantage.” wonderful to be returning to continue have learned, the purposeful use of their with was uncertainty about the diagnosis,” Prof Danks’ legacy.” hands and the ability to walk and to talk. Prof Christodoulou says.

22 23 mcri rising stars

Sophia Frentz is a PhD because at the moment, there are no What do you hope your research PhD student Alex Sexton- I like to set myself really achievable tasks, What do you hope your research current treatments that show any clinical will ultimately achieve? like ‘print application form’, it makes me will ultimately achieve? student and one of two Oates is one of two winners feel very accomplished. Our lab tends to benefit. We work with the Australian Having just finished my PhD and being I’m just happy if I put another building block do short experiments that generate a lot of recipients of the MCRI Mitochondrial Disease Foundation and of the 2016 MCRI Rising uncertain of what area of research I’ll work in the pyramid of mitochondrial research. this allows us to meet patients; observing data, so I spend most of my days processing in next, it’s hard to have specific goals. But Whatever I do, as long as I do it and record Rising Star Award in 2016. children and families afected by these Star Award. She studies and analysing data – and drinking tea. in general I hope by the end of my career it well, the people who come after me will debilitating conditions provides a lot of I will have made a positive contribution to She grew up in Tauranga, be that much further. paediatric central nervous What do you enjoy about working motivation to improve their lives in any child health, no matter how small! at MCRI? New Zealand and is a way that I can. After my PhD, I’m keeping my options open: system tumours and is an passionate advocate for I like solving problems. Check in on me in avid tea drinker. I really love the building, but probably what What do you enjoy doing when you’re Why did you choose a career I enjoy most is being part of the hospital women in STEM (science, five years! not working? in science? environment. Research can often be very I love music so I like going to gigs and slow but I find being connected in some technology, engineering I was always going to be a scientist – my What do you enjoy doing when you’re Tell us about your research? festivals. I also enjoy reading, baking way to the patients is very motivating. and medicine). mum takes great pride in regularly pulling not working? I study paediatric central nervous system and attempting to be artistic. Right now out something I wrote when I was four I’m currently enjoying my boxing classes. tumours, which despite being very rare are During my PhD, I’ve been lucky enough to I’m working on a paint-by-numbers of “Elephants at a watering hole” (it looks saying I was going to be a great scientist I like taking some time for me – video games, the second most common cause of death in work with the oncology and anatomical nothing like the original unfortunately). Tell us about your research? like Charles Darwin. It was illustrated. This walks, visits to the art gallery or the museum, Australian children. Specifically my research pathology departments at RCH, attending reading. I try to block out Sunday mornings focuses on DNA methylation, a type of I’m investigating mitochondrial diseases particular childhood relic supports my case discussions and post-mortems, which to take myself out for cofee and read a epigenetic mechanism, which we use to What advice would you give to other – diseases that occur when your cells decision not to choose a career in art. have continually inspired me. book, although that can fall by the wayside. help us develop a better understanding of young scientists, including women? can’t make enough energy. I’m particularly I planned to focus on physics but in my tumour biology. Potentially, we’d like to find My best advice would be to be confident looking at Leigh Syndrome, which is an Why did you choose a career What advice would you give to other ways to help clinicians give children and in your abilities. Of course being new to early-onset neurodegenerative disorder final year of high school, I was selected to in science? young scientists, including women? their families an accurate prognosis. research means we have limited knowledge that typically causes fatality in childhood. represent New Zealand in the International What appeals to me most is that it requires and experience, but often we can be Biology Olympiad. As a result, genetics Don’t let anyone tell you that you can’t. continual learning. I’ve always enjoyed What does your average day dismissed or ignored just because we’re I’m comparing and contrasting diferent won the day, the degree and the countless Be unapologetically passionate. Say yes studying. Working in science means I’m at work look like? young women. Be confident that you’re ways of modelling mitochondrial disease, hours of study and work. to things. Later on, learn to say no. Spend always learning about diferent diseases, intelligent and that you might just have a using human cells like stem cells as a time figuring out what you like, and don’t I always start work by making a cup of tea biological mechanisms, experimental My dad’s a town planner and my mum is a good idea that deserves to be heard. starting point. I hope my research will freak out if that changes. Be ready to fight in my hideous 70s style mug that I stole techniques and analysis methods. progress to the point where we can move journalist and despite not being particularly for yourself, because nobody else will. from my parent’s house. I check emails, forward the testing of potential new scientific, they’ve always wholeheartedly Know you’re brilliant and don’t be afraid plan my day based on what’s left on my A career in science also allows you to travel treatments for mitochondrial disease supported my interest and love for science. of asking questions. to-do list and have another cup of tea. overseas, which I really enjoy.

24 25 Pictured: Professor Susan Sawyer and Professor George Patton landmark lancet

A landmark publication level, it’s also the time when parts of the including USAID, World Bank and the Bill A challenge is ensuring that young people The facts brain underpinning mental health and and Melinda Gates Foundation. They also continue to be engaged in the process.” in the prestigious journal emotional wellbeing are being shaped. presented the findings at the 2016 World The recommendations Prof Patton describes the success of the 2016 Health Assembly, the forum that governs In 2016 The Commission was The Lancet in 2016 signalled The Commission report argued that report as the beginning of a new chapter, the World Health Organization (WHO). The Lancet’s most downloaded • Reframe the place of adolescent investing in adolescent health has the drawing similarities with the growth of a turning point in how publication health and wellbeing in health, potential to deliver “triple dividends” This was the beginning of a massive maternal and child health programs and economic and education policy. the world understands of benefits today, into adulthood and international engagement program, which policies over the past 30 years. for the next generation. It included six included regional events and forums, 389,000 people • Set clear objectives based on adolescence. “Adolescent health will become as big a 389,000 people reached in a one- recommendations for comprehensive and webinars and Twitter chats. national and local needs. integrated action around adolescent health. field as maternal and child health is now,” hour Twitter chat via @LancetYouth Our Future: Commission on adolescent The Commission report was a headline Prof Patton says. “The Melbourne Children’s • Use social and digital media and health and wellbeing Chair Professor “Adolescents and young adults are feature at the Spring Meeting of the leads on this research now, but there’s stif 21 events school and community-based George Patton explains how, due to themselves central actors in creating their International Monetary Fund and World competition globally – so investing in the 21 Events around the world delivery, to reconfigure health previous under-investment, it was “no health and wellbeing,” Prof Patton explains. Bank in April 2017, and the report’s findings ‘next generation’ of researchers is essential (London, Copenhagen, New York, services towards universal health surprise” to see major gaps in knowledge “So it was also essential that this work have been taken up by institutions including to ensure we remain global leaders.” Geneva, Washington DC, Seattle, coverage. about adolescent health issues. reflected their views.” the WHO, UNICEF and the World Bank, and Kampala (Uganda), Melbourne, • Engage more young people – by major global donors. Vancouver, Johannesburg they are powerful agents for social “It is profound, when compared with other The Commission was led by Prof Patton and (South Africa), Denver, Canberra, change and their own health and areas of health,” he says. Prof Sawyer at the Centre for Adolescent To build on the report, the Lancet has Beirut (Lebanon)) Health, a joint venture between MCRI, the committed to a Standing Commission that wellbeing. “There are 1.8 billion adolescents in the world Royal Children’s Hospital and the University will run for at least five years, and will aim to 368 people / 45 countries now – almost 30 per cent of the population. of Melbourne. The collaborative project • Invest in more research, training, focus action around implementing the 2016 Participated in webinar on It’s the biggest generation of adolescents involved University College London, the financial and technical systems recommendations. adolescent girls’ diet and eating there will ever be in human history.” London School of Hygiene and Tropical to grow knowledge. habits Medicine, Columbia University and the “It’s the first time the Lancet has Why this matters, MCRI researchers University of Washington. committed to a Standing Commission on Prof Patton and co-author Professor any global health topic,” Prof Sawyer says. Susan Sawyer explain, is that it’s during After the launch of the report at University adolescence that the foundations for health, College London in May 2016, Prof Patton “We see it as an opportunity to create an education and other future life outcomes are and Prof Sawyer travelled to Washington DC interdisciplinary academic community laid. On a physiological and psychological and Seattle for events hosted by institutions focused on adolescent health and wellbeing.

26 27 early birth blues

MCRI’s research on rates care unit (NICU) where a team of specialists and anxiety similar to mothers, with more began the vital work to save their lives. than one in three experiencing depression of depression and anxiety soon after their child’s birth. “I remember standing there with this incredible among parents of premature feeling of overwhelming helplessness,” “The findings demonstrate we need to be babies highlights ways for Radford says. “There was a primal part of me conscious of fathers’ wellbeing too,” said that wanted to push everyone away and help Dr Pace. “Most dads remain involved in the mums and dads to navigate the kids. But there was nothing I could do.” day-to-day care of their babies while they through this turbulent time. are in hospital and often juggle this with Radford and Kirsten, whose twins are now returning to work. healthy three-year-olds, took part in a study led by MCRI investigating depression and “We found both depression and anxiety Marketing professional Radford White was anxiety in parents of babies born before decreased quicker in fathers who accessed at work when he received the call from his 30 weeks. support services during their hospital stay,” pregnant wife at the hospital, where she she said. was having her 30-week scan. One of their The study led by MCRI’s Dr Carmen Pace unborn twins was struggling to survive. followed 113 mothers and 101 fathers at the Radford found great solace during his Through tears, she told him the babies Royal Women’s Hospital every two weeks for family’s dificult time in the NICU by joining would have to be born early, via emergency the first 12 weeks, and again at six months the Dad’s Group at the hospital where talking caesarean section the next day. after their babies’ birth, in the most detailed and supporting other fathers about their investigation of depression and anxiety in experiences was the norm. Radford sprang up, raced to tell his manager and made his way to the hospital. A half- parents of very premature babies during the “Part of the stress of being in that empty cup of tea sat, abandoned, on his desk. newborn period. environment is that you don’t have a road Dr Pace said understanding the mental map to negotiate it. You’ve never been there The twins’ diagnosis was frightening. before. If you had a map you’d be able to health of premature babies’ parents is critical One of the babies’ umbilical cord nutrients follow it and have some confidence in the because parental depression and anxiety was flowing backwards, depriving him of path you take. Having other dads there was can persist and adversely impact parenting sustenance. really helpful. It was like a team and we and attachment, and ultimately, child backed each other to be the best dads we Radford and his wife, Kirsten, spent that development. night with two Doppler machines moving could be, given the circumstances.” over her belly, desperately tracking the twins’ The results, published in JAMA Pediatrics, heartbeats. The couple were in “complete found more than a third of parents of very fear of losing the twins,” Radford recalls. premature babies struggled with depression “We were awake the whole night. It was the and anxiety after their babies’ birth and longest night of our lives.” more than one in five were still experiencing symptoms six months later. Pictured: Radford White with Twins Rupert and Maisie were born the twins Maisie and Rupert. next day, at 29 weeks and six days gestation, The findings also revealed the fathers of Researcher Dr Carmen Pace and were admitted to the neonatal intensive premature babies had rates of depression

28 29 the alcohol taboo

Professor Jane Halliday But many women – between 30 to 40 per Of the 1570 women who participated in the However, the most important findings The children have been followed up at age cent – consume alcohol before realising they’re study, 41.3 per cent did not drink alcohol are yet to come. Researchers including two to determine if there have been any and Evi Muggli are delving pregnant. Other women continue drinking, at all during their pregnancies. Almost one Ms Muggli are poised to publish more developmental impacts. Findings on the deep into the unanswered although at lower or moderate levels, perhaps third drank alcohol in the first trimester only, findings in 2017, including an analysis of two-year-olds will also be published in 2017. believing it is not going to harm their baby. most of whom stopped immediately when 3D facial images of about 400 babies in The researchers hope to follow the children questions around they discovered they were pregnant. Another the study taken at age one. The AQUA study – Asking Questions about third drank alcohol at some level throughout up again at school age, because this is when drinking alcohol during any cognitive and other developmental Alcohol in Pregnancy – is led by Prof Jane their pregnancy. Researchers are looking at facial shape Halliday, who began her long-standing career problems become more apparent. pregnancy – and what level because a child’s face can look quite with MCRI more than 30 years ago. The study Women were asked if they drank on special diferent if exposed continuously to high of consumption, if any aims to improve the messages provided to occasions, which resulted in almost one “We want to improve the messages provided amounts of alcohol in the womb. These amount, is safe. women about drinking during pregnancy. in five women (18.5%) revealing they had to women and encourage people to better episodes of binge drinking at special events. characteristics can be used to help diagnose understand the risks that are associated with In 2016, Prof Halliday’s team, including Senior Fetal Alcohol Spectrum Disorder (FASD). drinking in pregnancy,” Ms Muggli said. Women are often given conflicting advice Research Oficer, Evi Muggli, published the “It’s important to know about these common about the harms of drinking alcohol during first results from this study. These initial drinking patterns,” Prof Halliday said. AQUA researchers have examined these pregnancy. To ensure no harm is done to the findings showed that women who drank “It helps researchers, health professionals and photos using sophisticated computer unborn baby, national policies specify that alcohol throughout their pregnancy tended policy makers develop more meaningful and technology and found very subtle signs of the safest option is to abstain completely to be in their early to mid-thirties, smoke, targeted health messages about the face changes, even if the mother drank only Pictured: Professor Jane from drinking throughout pregnancy. have a higher income and be well-educated. importance of not drinking during pregnancy.” low or sporadic amounts. Halliday (L) and Evi Muggli (R)

30 31 Pictured: CFA firefighter Lowan Sist with 1. 2. 3. 4. Ryan, 3, and MFB Leading firefighter Steve Axup with Cooper, 6. Photo courtesy Herald Sun/Mark Stewart

5. 6. 7.

8. 9. 10.

1. Alice Frankcomb, who has a rare genetic condition, with the Sydney Dance Company. Photo courtesy Herald Sun. 2. Professor Kathryn North and Janet Calvert-Jones. 3. Dame Quentin stair your Bryce AD CVO. 4. Andrew, Jean and Chris Miller. 5. Alice Frankomb and Ros Packer AO. 6. Sarah Hancock and son Ashton, Peter Mitchell. 7. (L-R) Associate Professor Paul Ekert, My Room Chairman Maurizio Marcocci, Children’s Cancer Foundation Chairman Jeremy Smith, Kathryn North celebrating 15 years of funding support. 8. Tanya Cherny, Nat Deague, Eliza Mantello, support Dahlia Sable, Kate Mohr. 9. Brilliance climb Rose. 10. Joan and George Lefroy.

The loyalty and generosity As part of the celebration of our Imagine the gruelling task of climbing “The breadth of MCRI’s research is a lucrative project recycling car batteries anniversary year, we released our pure 28 flights of stairs of an inner city high- remarkable and has a global reach,” he contributed to individuals and brigades of our donor community has white Brilliance Rose to mark this special rise building. Now imagine attempting this said. “It was a perfect fit for the Firefighters competing for the title of highest fundraiser. milestone in recognition of Dame wearing 25kg of protective firefighting Charity Fund to select MCRI as the 2016 never been more evident than “I just love that grass roots element of Elisabeth Murdoch. clothing and breathing apparatus. charity partner for this event.” in MCRI’s landmark 30th year. fundraising that engages the community. Our corporate partners, Big W, BUPA, This is exactly what more than 500 Mr Axup said during the lead up to the stair That’s pretty special,” Mr Axup said. News Corp, Foxtel and Nova assisted us firefighters from Australia, New Zealand climb, several colleagues revealed a personal The support shown in the past 12 months by to spread our message far and wide. Ace and the US achieved at Melbourne’s Crown connection to MCRI. A fellow firefighter lost Community fundraising events like the individuals, families, community groups, trusts, Radio and Macquarie Radio also contributed Metropol on September 3, 2016, raising vital her brother to Menkes syndrome, a condition Melbourne Firefighters Stair Climb are foundations and organisations continues the significant in-kind media support. funds for MCRI in the process. that has been under the microscope at MCRI. incredibly important to MCRI’s ability to change children’s lives. Money raised is strong legacy of philanthropy built over the The Institute’s founding director, Professor Through special celebrations and in The Melbourne Firefighters Stair Climb, which used to seed-fund new and exciting projects, past three decades at the Institute. David Danks, discovered the disease was memory of loved ones, through community simulated the actions firefighters would carry which, once established, have a proven linked to copper absorption. We were delighted to launch our Council events large and small, every single dollar out at a high-rise building fire, galvanised track record of attracting further funding. of Ambassadors, a dedicated group of raised has gone directly to our research Australian and international firefighters to raise Another colleague, Gippsland firefighter David senior women leaders and representatives programs. funds for MCRI’s child health research. Ward, was motivated to join by his son who of Australia’s major Trusts and Foundations, Your philanthropy has encouraged others has fragile X syndrome. MCRI is a world-leader who actively advocate for a better world for Event manager, Leading Firefighter Steve to get involved. You have helped knit our in fragile X research. all children - Dame Professor Marie Bashir AD Axup said the firefighting community is community together. You have assisted our CVO, Dame Quentin Bryce AD CVO, Janet a tight-knit family unit, with many of the Firefighters connected with their communities researchers to save the lives of thousands Calvert-Jones AO, Paula Fox AO, Jean Miller, participants parents themselves. A fundraiser and their imaginations to raise funds beyond of children. Ros Packer AC, Lady Primrose Potter AC, for child health struck a strong chord with asking for sponsors. Trivia nights, sausage Jeanne Pratt AC and Frances Underwood. Thank you. these families, Mr Axup said. sizzles, trash and treasure markets and even

32 33 Pictured: Elliott

the gift of giving

One of the most life- changing ways you can tomorrow’s support MCRI is to include a gift in your Will. It’s a gift for the future for all children.

Laurence Cox AO, a former director and chairman at MCRI, has seen first-hand how medical discoveries made at the Institute have saved young lives around the world. cures “Research is critical to save more children in the future,” Mr Cox said. “We’ve made great progress over the past 30 years, but there’s still so much more we can do. The wonderful generosity of people who remember us in their Wills has allowed our researchers to focus on many new and innovative projects over the years. These gifts, whatever their size, are vital so need your we can keep leading the world with bold discoveries that help children everywhere. As a father and grandfather, the future health and welfare of all children in the community is crucially important to me.” For a confidential discussion about your wishes, please don’t hesitate to contact us today. support today Every donation, no matter the size, has the potential to save a child’s life.

Help MCRI find solutions for serious child health issues. With your support, our researchers can continue to discover cures and preventions for conditions such as allergies, diabetes, cancer, obesity and genetic conditions.

To donate today 1300 766 439 www.mcri.edu.au

34 35 financials at a glance statement of comprehensive income as at 31 december 2016

Consolidated The Company

Revenue 2016 2015 7% 2016 2015 2016 2015 Other research income $ (Mil) $ (Mil) $ $ $ $ 6% Government and other Contract research & clinical trials Revenue from research & clinical activities 110,735,347 106,781,072 85,174,016 82,715,498 67.46 64.36 research grants Depreciation & amortisation (6,997,696) (7,622,318) (5,717,205) (6,488,673) Clinical services 25.66 24.19 3% Finance income Other expenses for research & clinical activities (120,308,207) (112,773,767) (96,130,015) (90,906,497) Donations, fundraising and 16.06 13.51 bequests

Finance income 3.30 4.18 12% Surplus/(Deficit) from research Donations, fundraising & clinical activities (16,570,556) (13,615,013) (16,673,204) (14,679,672 Contract research and clinical 8.38 8.46 & bequests trials Donation, estates & bequest & fundraising income 16,061,142 13,508,384 16,061,142 13,508,384 Other research income 9.24 9.78 20% Fundraising expense (1,669,579) (1,756,521) (1,669,579) (1,756,521) Total revenue 130.10 124.47 Clinical services Net surplus obtained from Fundraising Activities 14,391,563 11,751,863 14,391,563 11,751,863

52% Net Finance income/(expense) 3,296,470 4,178,254 3,202,595 4,055,761 Government & other research grants

Operating surplus for the period 1,117,477 2,315,104 920,953 1,127,952

Other comprehensive income: Items that may subsequently be reclassified

Expenditure 2016 2015 10% to profit or loss: Faculty, technical & scientific services $ (Mil) $ (Mil) Net change in available for sale financial assets 610,687 (299,827) 610,687 (299,827)

Research expenditure 80.69 74.12 6% Administration Total comprehensive surplus for the period 1,728,164 2,015,277 1,531,640 828,125 Clinical services 25.46 23 1% Fundraising 1.67 1.76 Fundraising

Administration 8.31 9.98 Facility, technical and scientific 12.85 13.3 20% services Clinical services Total expenditure 128.98 122.15

63% Research expenditure

36 37 statement of financial position statement of cash flows as at 31 december 2016 as at 31 december 2016

Consolidated The Company Consolidated The Company

2016 2015 2016 2015 2016 2015 2016 2015

$ $ $ $ $ $ $ $

Current assets Cash flows from operating activities

Cash and cash equivalents 22,669,583 28,337,576 17,281,364 18,843,901 Patient fees received 22,784,084 20,767,106 - -

Trade receivables and other assets 8,266,841 8,799,703 6,231,801 6,322,016 Government and other grants received 70,521,791 65,813,290 64,410,098 59,371,752

Other investments 29,717,440 21,669,314 24,139,369 21,102,407 Donations received 15,537,404 13,513,921 15,532,544 13,508,384

Total current assets 60,653,864 58,806,593 47,652,534 46,268,324 Interest received 782,586 1,617,058 564,516 1,367,200

Other receipts 18,788,764 19,647,219 20,232,139 22,097,219

Non-current assets Advances to (from) related parties - - 31,788 (79,302)

Trade receivables and other assets 59,024,277 60,365,738 59,024,277 60,365,738 Cash paid to suppliers and employees (122,634,929) (115,298,245) (97,272,151) (93,242,414)

Other investments 46,601,994 43,644,171 46,601,994 43,644,171 Net cash provided from/(used in) operating activities 5,779,700 6,060,349 3,498,934 3,022,839 Property, plant & equipment 13,847,057 15,114,627 11,884,264 13,878,351

Intangibles 1,234,202 1,990,346 - - Cash flows from investing activities Total non-current assets 120,707,530 121,114,882 117,510,535 117,888,260 Investment income received 2,513,884 2,511,227 2,638,079 2,388,732 Total assets 181,361,394 179,921,475 165,163,069 164,156,584 Acquisition of property, plant and equipment (3,632,521) (5,612,284) (2,381,657) (4,827,344)

Acquisition of investments (10,395,261) (2,056,813) (5,384,098) (2,056,813) Current liabilities Net cash (used in)/from Trade and other payables 29,662,759 31,059,216 27,066,384 28,795,540 investing activities (11,513,898) (5,157,870) (5,127,676) (4,495,425) Employee benefits 13,076,339 12,208,399 8,858,100 7,856,275

Total current liabilities 42,739,098 43,267,615 35,924,484 36,651,815 Net increase/(decrease) in cash and cash equivalents (5,734,198) 902,479 (1,628,742) (1,472,586)

Non-current liabilities Cash and cash equivalents at 1 January 28,337,576 26,458,661 18,843,901 19,340,051

Employee benefits 2,057,996 1,817,724 1,676,371 1,474,195 Efect of foreign exchange on opening

Total non-current liabilities 2,057,996 1,817,724 1,676,371 1,474,195 cash balances 66,205 976,436 66,205 976,436

Total liabilities 44,797,094 45,085,339 37,600,855 38,126,010 Cash and cash equivalents at 31 December 22,669,583 28,337,576 17,281,364 18,843,901

Net assets 136,564,300 134,836,136 127,562,214 126,030,574

Members’ funds

Accumulated funds 134,030,394 132,912,917 125,067,853 124,146,900

Fair value reserve 2,494,361 1,883,674 2,494,361 1,883,674

Translational Research fund 39,545 39,545 - -

Total members’ funds 136,564,300 134,836,136 127,562,214 126,030,574

38 39 message from the Chairman board of MCRI’s world-class researchers directors make a real diference to 2016 children’s health.

Mrs Suzi Carp (Chairman) MCRI is the largest child health research institute in Australia and one of the top five worldwide. Our team Mr Simon Rothery of more than 1500 talented researchers is dedicated (Deputy Chairman) to making discoveries to prevent and treat childhood Mr Steven Casper conditions. Many of our researchers are also clinicians at the Royal Children’s Hospital in Melbourne. Their Dr Charles Day research is informed by the problems facing their Mr Bruce Grey patients but it also means when a discovery is made, this is quickly transformed into practical treatments for Mr Patrick Houlihan children in the hospital. Professor Christine Kilpatrick We research health conditions including diabetes, Hon Rob Knowles AO allergies, asthma, premature birth and mental health problems, which are on the rise in our children, and Mr Ian Miller conditions including cancer and genetic disorders that Mrs Kate Mohr rema in unsolved. We study the health of communities to understand what factors influence child health at the Mrs Sarah Murdoch population level and research common infections and Professor Paul Monagle immune conditions both locally and globally.

Professor Kathryn North AM We are one of the only research institutes in Australia Mrs Judy Paterson to ofer genetic testing to find answers for families of children with previously undiagnosed conditions, Mr Paul Rayner using the latest genetic sequencing technology. Mr Jason Yeap OAM We also conduct national newborn screening and allow children to access personalised treatments for conditions like cancer.

At MCRI, we want all children to have the opportunity to live a healthy and fulfilled life.

It is such an honour to the Board continued their commitment to values and their wonderful legacy has advance our commercialisation strategy. been vigilantly continued by every leader, be writing this message This work will ensure MCRI can progress its including our extraordinary Director, to you as Chairman of this breakthroughs internationally and accelerate Professor Kathryn North. research into treatments and products. great Institute. We can’t do any of this alone, however. The list of genuine contributors to our 30-year journey is endless - our past This year’s achievements would not be and current directors, the extraordinary MCRI, now in its 30th year, has achieved so possible without the generosity of our members of our Development Board, much in the last three decades and 2016 was supporters. In 2016 our fundraising and our esteemed Council of Ambassadors, no exception. Our dedicated researchers, donor contributions continued to grow supporters and above all, our inspirational once again, have proven the profound while being complemented by our success researchers. impact their work has on the lives of children in attaining government and other grants everywhere. Our home might be rooted in - a true testament to the quality and On behalf of the staf, the researchers and Melbourne, but our work transcends borders importance of our work, particularly in this the MCRI Board, I sincerely thank you all and our reach literally extends all the way highly competitive environment. for your support in 2016. We hope you’ll around the globe. I’m humbled to report stay will us on this wonderful journey as we that the progress we’ve made this past year This anniversary year has also provided continue to pursue the ambitious road map will continue to not only save lives, but to me an opportunity to reflect on my own set by Professor North and her executive transform the lives of millions. involvement with MCRI. I was introduced team in 2017. to the Institute more than 16 years ago The highlights of the year, for me, are diverse, by our former chairman Laurie Cox. One from our work towards what will be a cure for of the things I loved most then, and now, deadly peanut allergy, to our major stem- is that within these walls all children are cell breakthroughs in the treatment of blood treated equally. It is our practice to embrace diseases and cancers, to our evidence-based diversity and inclusiveness - and this is research supporting pregnant women and something we should all be very proud of. new parents give their children the best start Mrs Suzi Carp in life. Diverse projects, yes, but all sharing Children truly are at the heart of everything one commonality that is discovering solutions we do and I am constantly inspired by the to some of our most intractable challenges humanity and greatness that exists here. that afect so many of our children. The shared sense of unity, curiosity, purpose, courage and empathy is reflected When it comes to bringing healthcare into in all our endeavours. Our visionary We kindly thank photographers Peter Casamento of the digital age, we’re also on the cusp of founders, Professor David Danks and Casamento Photography and Julian Kingma. We would also some very exciting discoveries. In 2016, Dame Elisabeth Murdoch, embodied these like to thank News Corp Australia for printing this report.

40 41 Murdoch Children’s Research Institute

The Royal Children’s Hospital Flemington Road, Parkville Victoria 3052 Australia

Phone +61 3 8341 6200 Fax +61 3 9348 1391 www.mcri.edu.au

ABN 21 006 566 972