Annual Report 2016

breakthrough

30 years of life changing discoveries

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 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

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

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 and varied ways in 2016. 32

Financial position and cash flows 36

Message from the Chairman 40

Published June 2017

2016

The Murdoch Institute for Research in Birth Defects founded by Professor David Danks with support from Dame Elisabeth Murdoch and her family, Sir Jack Brockhoff, the Scobie and Claire Mackinnon Trust, the Miller family and others. 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.

> Professor Andrew Sinclair and team identify the sex-determining gene SRY. The discovery attracts worldwide media attention and finally provides an answer to one of our most fundamental questions – what makes us male or female?

The Institute’s focus on Menkes syndrome culminates in the co-discovery of the Menkes gene led by Professor David Danks and Professor Julian Mercer.

Landmark study by Professor Kerr Graham proves the safety and effectiveness of Botulinum toxin A – Botox – for children with cerebral palsy.

A trial of rotavirus vaccine developed by MCRI researchers, RV3, found the immune system was successfully stimulated and therefore protected against the virus.

The Murdoch Institute and The Royal Children’s Hospital Research Institute merge to form the Murdoch Children’s Research Institute (MCRI).

Research by Professor Katie Allen’s team contributed to the recommendation that parents introduce cooked egg into their child’s diet between four and six months, not 10 months as previously directed.

Bill and Melinda Gates Foundation award $1.4 million to MCRI to help combat childhood pneumonia by improving pneumonia vaccines.

MCRI moves into its new world-class facility, co-located with The Royal Children’s Hospital. The facility was officially opened by Her Majesty Queen Elizabeth the next year.1986

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Victorian Infant Hearing Screening Program established - one of the first whole-of-state screening programs in the world to detect congenital hearing loss.

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Professor Ruth Bishop awarded the CSL Florey Medal for her lifetime’s work on rotavirus.

Research led by Professor Katie Allen discovers low levels of Vitamin D in infants with Australia-born parents is linked to an increased risk of food allergy.

Professor Kathryn North joins MCRI as its new director.

Adults conceived through IVF and other assisted reproductive technologies have mostly grown up as healthy individuals, an MCRI study finds.

The Australian Genomics Health Alliance (AGHA), a national network of 47 partner organisations, led by Professor Kathryn North and Professor Andrew Sinclair is established.

Professor Melissa Little leads a research group that successfully grows a ‘mini kidney’ from stem cells in a dish.

The Melbourne Children’s Trials Centre is established.

A clinical trial led by Professor Mimi Tang finds 82 per cent of children involved in the study with a peanut allergy can tolerate peanut after treatment with a probiotic taken in conjunction with peanut protein.

Victorian Clinical Genetics Services celebrates 50 successful years of newborn screening in Victoria and MCRI celebrates its 30th anniversary.

The Fontan registry is established by Associate Professor Yves d’Udekem. The Registry collects health information on Fontan patients living in Australia and New Zealand.

Rupert Murdoch contributes a $10 million grant on behalf of his family to MCRI.

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A study shows that behavioural sleep techniques, known as “controlled comforting” and “camping out”, are an effective way to help infants sleep better and reduce mothers’ depression levels.

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MCRI Patron Dame Elisabeth Murdoch passes away on December 5th.

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Your generosity changes lives and brings hope to children, families and communities. This is an achievement we can all be proud of. Thank you for all of your contributions.

It has been a joy and a privilege to lead the Murdoch Children’s Research Institute in 2016, and I’m exhilarated when I think about what we will discover next.

message from the director

It is my pleasure to share our 2016 annual report with you.

As Director of this remarkable institution, I’m immensely proud of the people I lead and the work we have achieved at MCRI.

This is a group of more than 1,500 curious and clever scientists, clinicians and administrative staff, who strive day after day to discover new knowledge that can, and does, make a difference to children, adolescents and their families.

At MCRI we tackle the toughest issues affecting children’s health, so every child can live a healthy and fulfilled life, and communities can prosper.

It is our vision to solve the challenges faced by the rise in epidemics that are increasingly common among our children: allergy, obesity, cancer, learning problems, depression and anxiety. And it is our goal to ensure we live in a world of wellness rather than illness.

To achieve this, we are focusing on prevention and early intervention, rather than waiting for disease and trying to treat it. We are pushing the boundaries by investing

in digital technologies together with medical science to make healthcare more accessible and we’re leading the way for disadvantaged children both locally and abroad.

When I walk the corridors of the Institute, I am inspired by the shared sense of unity, purpose, and excitement about the potential of discovery shared by the MCRI community.

MCRI had a remarkable year in 2016 – the year we celebrated 30 years of life-changing discoveries at the Institute. In the following pages, we share with you some of our most exciting highlights and achievements, including:

• The discovery that we are well on the way to creating the right type of blood stem cells in the lab to potentially treat blood diseases and leukaemia;

• A new partnership forged with investors to accelerate the development of a life-changing treatment for peanut allergy, developed here at MCRI;

• How we are finding more answers than ever before for children with rare, unexplained illnesses through cutting-edge genomic testing.

We have received support from federal and state governments, grant funding bodies, venture capitalists, and donors who value research and innovation as much as we do. This has been instrumental in the advancing our ability to deliver our research.

Our scientists work alongside two heavyweights in child health and academic leadership – the Royal Children’s Hospital and University of Melbourne Department of Paediatrics are just metres from our labs. The joint focus on collaboration and translation is second to none, and discoveries quickly convert into practical treatments for children in hospital and the community.

It works the other way as well. Our research leaders are all university academics and enthusiastically train and mentor the next generation of researchers. Many of our scientists are also clinicians, and they are able to use research to solve problems that arise in their daily work with children and families.

All of this would not be possible without vital funding from state and federal governments, including the National Health and Medical Research Council.

The legacy of Dame Elisabeth Murdoch lives on through the trusts, foundations and individuals who generously gave us more than $16 million to help us continue to fight the most troubling health issues affecting children. We are especially grateful for the continued support of the The Royal Children’s Hospital Foundation who provided funding to some of our most innovative research projects.

Professor Kathryn North

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

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year at a glance

Pictured: Harry and James

$130.1m $35.88m $11.79m $71.8m $16.06m 951 1,719 1,181

Total revenue

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Donations, fundraising and bequests

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People

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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 affecting 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 difference.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.

Pictured: Benjamin

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in brief

Stopping antibiotics soonerAntibiotic resistance is a global crisis – and MCRI researchers are part of the international effort fighting this worrying trend. Associate Professor Penelope Bryant, a Clinician Scientist Fellow, led a review which recommended shortening the courses of antibiotics in children, when appropriate, to help fight resistance. The review, published in Lancet Infectious Diseases, looked at 36 common bacterial infections in children requiring antibiotics and found many traditional courses are too long, keeping children in hospital unnecessarily and leading to resistance. The evidence suggested switching from intravenous to oral antibiotics could happen earlier than previously recommended for some infections. A/Prof Bryant said the study has helped to form national guidelines around the duration of IV and oral antibiotics for children with bacterial infections. “Antibiotics are prescribed for most children. We have provided practical and evidence-based advice on when doctors can shorten courses of antibiotics to help in the fight against resistance.”

Stamping out cancer Childhood cancer survival rates have increased dramatically over the past 60 years, from virtually zero to 80 per cent. But what if we could increase this rate to 100 per cent? MCRI is part of a national group aiming to achieve just this. The Zero Childhood Cancer Initiative strives to completely eliminate any child deaths from cancer. MCRI is collaborating with the Victorian Comprehensive Cancer Centre on this initiative, which received $20 million in federal funding in 2016. The initiative aims to create a national personalised medicine program for babies, children and adolescents with high-risk cancers that typically have poor outcomes. If fully implemented, it would allow every newly-diagnosed paediatric cancer patient in Australia with a hard-to-treat disease to have their therapy tailored to the tumour’s genetic characteristics.  “This is a really important initiative, as it will drive personalised medicine for childhood cancers,” said Associate Professor Paul Ekert. “This will enable us to treat the most difficult childhood cancers and maximise the chances of finding cures, while reducing the toxicity of treatments. We can do this by ‘reading’ the genetic code of the tumour to tailor the treatment to that child.”

Digital health solutionsA virtual reality game that transports sick children from their hospital beds to imaginary worlds is one of the two winners of MCRI’s inaugural digital health technology award, Bytes4Health. Virtual reality company Phoria is exploring the scientifically-proven therapeutic benefits of the technology to help sick children cope with pain and anxiety. “There’s good evidence that the distraction provided by virtual reality is good for pain management and reducing anxiety,” said Phoria’s Trent Clews De-Castella. A disposable device that clips onto a smartphone to digitally examine skin lesions, by company SkinView, was the second recipient. Associate Professor Andrew Steer will be the first MCRI researcher to test the benefits of this technology in the field, with his work with infectious skin diseases like scabies, in the Pacific region. The device’s portability and cost-effectiveness are part of its appeal in lower-income countries. Phoria and SkinView both received $25,000 and the opportunity to work alongside MCRI researchers to develop their digital health technologies.

New Fiji vaccines Fijian children will now have healthier futures following the introduction of three new vaccines to tackle pneumonia, diarrhoea and cervical cancer. The vaccines, introduced with the assistance of MCRI and the Australian government, have had a significant impact on reducing these life-threatening diseases in Fiji. More than 90 per cent of all children were vaccinated under the program, run by the Fiji Ministry of Health. The pneumococcal immunisation targets pneumonia, severe blood infections (sepsis) and infection in the brain (meningitis). The rotavirus vaccine prevents life-threatening diarrhoea in children and the human papillomavirus vaccine (HPV) protects young girls against cervical cancer. MCRI’s analysis found hospital admissions for pneumonia in children under five almost halved, from about 1000 to 500 each year, while those for meningitis and invasive pneumococcal disease also dropped. The number of children carrying the pneumococcal germ declined in all age groups. This should reduce diseases from these bugs and mean fewer children die or suffer brain damage and disability, which is common in children who survive meningitis. Rotavirus diarrhoea admissions declined by 70 per cent in children under five.

Stomach cancer breakthroughHelicobacter pylori (H. pylori) is a bacteria acquired during early childhood which infects roughly half the world’s population. It triggers inflammation in the stomach lining and while it’s harmless in 85 per cent of cases, it can cause ulcers and stomach cancer in the remaining 15 per cent of people. Dr Treve Menheniott led research which found a particular protein, called GKN2, is “switched off” in people with stomach cancer, suggesting that it might protect against H. pylori infection and related stomach cancer risk. The team showed in the lab that genetically engineering GKN2 to normal levels significantly inhibited tumour growth. These results have exciting implications for the future of stomach cancer treatment. Diseases caused by H.pylori are treated with antibiotics to prevent stomach cancer, however some strains of the bacteria are becoming antibiotic-resistant. Dr Menheniott’s findings could boost efforts to find new ways to combat stomach cancer.

Leading researchers recognised Growing mini-kidneys in a dish is the next frontier in medical research. It’s unchartered territory and opens the door to safely test new drugs for kidney disease, cell therapy and could even lead to bioengineering kidneys for transplant. It’s no wonder this headline-grabbing research won Professor Melissa Little and her team one of the most prestigious science awards of 2016, the Australian Museum Eureka Prize. Also nominated as a finalist in the infectious diseases category was Associate Professor Andrew Steer for his work in the Pacific controlling scabies, a terribly itchy skin disease that can become infected and lead to deadly diseases of the kidneys, heart and blood. This work won A/Prof Steer two accolades from the Heart Foundation – the Future Leader Fellowship, recognising him as one of the best cardiovascular researchers and the Paul Korner Innovation Award, given to the most innovative research projects. A/Prof Steer was recently promoted to lead the Infection and Immunity theme at MCRI while Prof Melissa Little now heads up Cell Biology.

Pictured: 1. Professor Melissa Little. 2. Dr Treve Menheniott. 3. Associate Professor Andrew Steer and Julius. 4. Associate Professor Penelope Bryant

Pictured: 5. Associate Professor Paul Ekert. 6. Phoria’s winning virtual reality technology (L-R Gemma and Stella). 7. Fijian children. (Photo: MM2008)

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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 Holy Grail will be creating the correct ‘magic cell’ in large enough quantities for transplantation into humans.

in the blood

Pictured: Dr Elizabeth Ng and Professor Andrew Elefanty

Dr Elizabeth Ng Andrew and I met at WEHI (the Walter and Eliza Hall Institute) in 1998 and have been together ever since. It was one of those things. We met on the job. We both loved the science. We didn’t actually bother getting married until 2012 at which point the children said, “About bloody time you two!” I have two girls and he has two boys (Sarah, 24, Isabella, 26, Matt, 26, and James, 29.) They grew up together and are very close. They share the same circle of friends.

Working together is actually really good. We have quite separate roles. Andrew is the big picture man. He was an oncologist – and a very good one – and went into research, whereas I am purely science. He runs the whole blood project and I get the stuff to work - I’m good with the cells.

Andrew’s fabulous. He’s extraordinarily intelligent and he’s got a memory like a steel trap. When I’m on the experiment trail, I’m on the trail. I will do many things at once and work long hours – more so now than

when the children were little. He’s got my back. I’m extremely poor at doing things that take me away from the bench when I’m on the trail. He sighs and says, “I’ll do that. You get back into the lab.”

Andrew is very good with a microscope. I’ll say, “I need a research assistant”. He doesn’t mind helping me with the work. Although he is the lab head, I can say “here, quick, take over this bit of the experiment now because I need to do such and such with the rest of the experiment.” And he’ll do it. We team up at the bench when we need to, to get stuff done.

Ever since day one of working together, I’ve been able to think out loud, air ideas and discuss things very openly. That is extremely valuable in an area of work that is very competitive.

In a nutshell, I want haematopoietic (blood) stem cell in a dish. Our 2016 success was creating the region of the embryo that gives rise to blood stem cells. We think we are almost there. Creating the haematopoietic

stem cell will be very valuable because everyone knows what to do with it once we’ve got it. It will help us treat human disease — it will be the magic cell that will enable us to study leukaemia or any other blood disease.

I love to read and garden. I love Flamenco dancing, yoga and the occasional spot of belly dancing. I love Flamenco’s unique integration of singing, guitar and dance. The dancer follows the singer but the guitarist follows the dancer. Andrew plays guitar at some of my classes so now it is his turn to follow me!

Professor Andrew ElefantyI met Elizabeth when she applied for a job at WEHI in 1998. We’ve worked together since at WEHI, Monash University and MCRI. We’ve lived together for many years, even though we only got married four years ago. All the children were there. They all dressed up and they definitely outshone us, they looked gorgeous. I was incredibly jealous of them.

At first we worked closely together and that always worked fine, we never had any periods of friction or arguments. Over the years our roles have become more separate. I spend more time in the office and Elizabeth still spends a lot of time in the laboratory. I still run the flow cytometer or the confocal microscope for many of our experiments. I think it’s very helpful to stay in touch with the primary data, to still know what the results look like.

The projects we’ve worked on since the beginning have involved the differentiation of pluripotent stem cells. The development

of blood cells has been the main theme and that’s still what we work on. You start with a stem cell and in the laboratory you take that cell through similar developmental stages to those it would go through as an embryo. That’s where we are really making progress. The ultimate goal is to make transplantable blood stem cells that would provide a direct, therapeutic outcome to treat patients who need stem cell transplantation – if they don’t have an existing perfect match – as part of their treatment for leukaemias or other blood diseases. We could also model blood diseases in children and adults to help us understand what things have gone wrong and look at different or new treatments.

We went to Spain about three years ago. I took some guitar classes and Elizabeth did Flamenco dance classes. Flamenco guitar is great because it’s technically very challenging and rhythmically very complicated. That’s been fun to do over the last few years. I’m definitely not a dancer, never will be! Elizabeth is a very passionate

and good dancer. I can just play well enough to accompany some of the (Flamenco) dance classes.

In a way she’s is a bit like a Renaissance woman. She’s incredibly widely read. She is passionately interested in history, gardening, cooking, the arts, as well as science. I think you see this in some very clever people. She would have been quite at home back in the time as a female Leonardo. In terms of the science, she has a real feel for it. She’s certainly the best person I know who can manage and look after cells. She’s probably one of the best, if not the best person who can differentiate human stem cells. She is a most interesting person.

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gut reaction

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 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 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.

Having a dog or siblings (dribble) – and therefore more exposure to bacteria in 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 – migrationChildren 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 different diet, bacterial and UV environment, are at much higher risk of developing food allergies.

Our research changed infant feeding adviceAt 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 babies are given solid foods around six months, but not before four months, while continuing breastfeeding if possible.

Pictured: Professor Katie Allen, leader of Population Health and group leader of Gastro and Food Allergy research, with patient Jenson.

Why a healthy immune system requires exposure to a wide range of germs

turning research into reality

Curve Tomorrow Curve Tomorrow is a health technology company uniquely embedded at MCRI since 2012. The group is collaborating with MCRI on more than 30 different digital health products that transform our ground-breaking research into tangible products for clinicians, parents, and the wider community.

ProTaProTa Therapeutics was formed in September 2016 to develop and commercialise an exciting allergy treatment developed by Professor Mimi Tang, which was successfully trialled on children with life-threatening peanut allergy. The treatment attracted a $15 million venture capital investment.

HeadCheck HeadCheck is a smartphone app for coaches and families to identify concussion symptoms in children. Developed by MCRI researchers and Curve Tomorrow, it asks questions about how a child feels after a head injury and suggests the appropriate course of action.

Sleep Well, Be Well In 2016, Professor Harriet Hiscock’s research found that parents who received behavioural sleep management advice, without a face-to-face consultation, were able to improve their children’s sleep problems. MCRI is developing a digital solution to help parents manage behavioural sleep problems in children aged six months to 13 years at home.

Bytes4HealthIn 2016 MCRI launched its inaugural digital health technology award, Bytes4Health. The two winners were Phoria, a company developing a virtual reality experience for children’s hospital patients and SkinView, a device which turns a smartphone into a medical-grade lens capable of examining skin lesions.

MCRI is a massive engine room of discovery. At any one time, there are about 450 research projects underway. This provides 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 on philanthropic or government funding by generating revenue that can be reinvested back into where it is needed most – research.

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Organ Health BMT test A new blood test developed at MCRI will allow doctors to better assess the success of bone marrow transplants. The Organ Health BMT test allows doctors to measure whether a bone marrow transplant has successfully engrafted and identify rejection or recurrence of disease earlier than existing methods.

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Combining peanut protein with a probiotic is a masterstroke in the quest to cure this deadly allergy

the perfect pair Here, Prof Tang gives

her expert advice about how to best manage food allergies.

1. Always check the ingredients in any food you are about to eat to ensure it doesn’t contain your food allergen.

2. Be extra careful when you are eating food prepared by other people, for example, at parties or restaurants. If you can’t be 100 per cent sure it is safe, then don’t eat it. Don’t share food with other people.

3. Have an action plan outlining what action to take if you experience an allergic reaction, including the use of an EpiPen if you have one.

4. Be familiar with allergic reaction symptoms, which symptoms are most serious and how to treat them. Excessive coughing, a croaky voice, noisy or difficulty breathing and feeling faint are all signs of a serious reaction that need to be treated with the EpiPen.

5. It’s a good idea to talk to your friends about your allergies so they can help you if needed. 

Peanut allergy is the most common cause of life-threatening anaphylaxis in children and it can cause death. Rates over the past 20 years have skyrocketed by more than 350 per cent.

That’s why Professor Mimi Tang’s clinical trials research to help children develop tolerance to peanut has been embraced worldwide and continues to make headlines.

The treatment developed by Prof Tang, which involves combining the peanut allergen with a specific probiotic, received a $15 million dollar boost in 2016 from venture capital firm, OneVentures. MCRI and OneVentures have set up a biotech company, ProTA Therapeutics, to work towards making the treatment available internationally.

The product has the potential to treat other food allergies to milk, egg, shellfish and other nuts. ProTA Therapeutics, set up to commercialise the treatment, will explore this approach.

Meanwhile, Prof Tang’s research into the longer-term benefits of the treatment is continuing.

“Most children don’t grow out of their peanut allergy – they have it for life,” Prof Tang says.

“In comparison, most children grow out of egg allergy by the time they are teenagers 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.

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the future is here Exome gene

sequencing gives families answers

Ginger Salisbury was an extraordinarily strong baby, impressing her parents by rolling from her tummy to her back when she was one month old. But at three months, her early progress slowed.

By five months, her mother Meg Salisbury was seriously worried. Ginger wasn’t meeting her developmental milestones. And as for sleep, it just never happened. She was awake for hours at night, prompting her exhausted parents to pore over sleep books and consult experts for answers that were never found. Something wasn’t right.

Meg confided in her husband, Matt, and her mother, a midwife and mother of seven, before taking action. “You don’t want to be that mother who is over-worried and over-protective,” she says.

When Ginger was seven months old, the family’s quest for answers began with a series of paediatric and maternal health appointments. The paediatrician referred

Ginger to the MCRI-owned Victorian Clinical Genetics Services (VCGS) where she was promptly included in a study that allowed all her genes to be rapidly sequenced in the search for an answer.

In February 2016, Ginger – who is now four – was one of the first people in Australia diagnosed with a very rare disorder called KAT6A-related syndrome. The condition is characterised by intellectual disability, lack of speech, early feeding difficulties, heart problems and distinctive facial features.

The diagnosis, while emotionally difficult to comprehend, gave the family much-needed answers, a way forward and an international support network of other affected families.

Ginger is one of more than one hundred children who have now been helped by whole exome sequencing carried out at the VCGS. Ginger was able to access the revolutionary test through a clinical trial, but in 2016 the Institute was one of the first in Australia given the green light to provide the accredited test to children with undiagnosed genetic conditions referred by their clinician.

The move means more children will be able to access the test to find answers without the additional hurdle of waiting for a spot in a research study.

Exome sequencing uses technology called Next Generation Sequencing, which allows all 20,000 genes to be rapidly tested at the same time.

“It has improved diagnosis rates for families of critically ill children who may have previously undergone years of testing without any answer to the cause of their illness,” says VCGS laboratory director, Dr Damien Bruno.

“In the past, young children have been through an arduous diagnostic odyssey that included months or years of invasive blood tests and painful biopsies. Some waited on lists for several years to access genetic testing through research trials.

“Now we can provide answers to families within weeks and for the most urgent cases, in as little as 10 days. We’ve been able to have a huge impact on the lives of seriously ill children to prevent them going through the often harrowing diagnostic ordeal in the first place.”

MCRI leads the Australian Genomic Health Alliance, a national network of clinical, diagnostic and research institutes with the goal of integrating genomic medicine into everyday care.

“Ultimately, we want to see genomic sequencing available to all Australians who need it,” says MCRI Director Professor Kathryn North. “Personalised medicine through genomic technology is an incredibly exciting area of healthcare with huge potential for combatting rare disease and cancer.”

Meg Salisbury says Ginger’s diagnosis has improved her prospects and put the family back in control.

“We feel like we can make a better plan, tailored to her. She starts preschool this year, so the preschool can access funding to have an extra carer to help with her. We are planning to send her through the mainstream school system as long as possible,” she says.

“We communicate regularly with other families with children affected by KAT6A. Because some of these children are older, we can see what they are dealing with and plan for that earlier than those families were able to – that’s a gift.”

• The VCGS Victorian Newborn Screening program tests newborns for more than 25 conditions.

• Clinical exome sequencing to identify the cause of health and developmental problems.

• Percept™ – a non-invasive prenatal blood test for chromosome conditions such as Down syndrome, Edwards syndrome and Patau syndrome.

• Prepair™ – a test to determine whether individuals and couples are carriers of genes for cystic fibrosis, fragile X syndrome, and spinal muscular atrophy.

• MSS – (maternal serum screening) a blood test for pregnant women to determine their chance of having a baby with a chromosome condition, such as Down syndrome.

• Prenatal diagnosis and pregnancy loss (to investigate causes of infertility and recurrent pregnancy loss).

• Other genetic tests for metabolic and heart disorders and cancer.

• Paediatric microarrays to investigate the causes of intellectual disability, developmental and behavioural concerns such as autism spectrum disorders and congenital malformations.

• Chimerism genetic testing – an in-house developed and patented test used to monitor the success of blood stem cell transplantation (like bone marrow transplantation).

VCGS tests

Visit vcgs.org.au for more information

Pictured: Ginger Salisbury with parents Matt and Meg Salisbury. Photo courtesy David Caird/Herald Sun

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In MemoryIn memory of Betty MalpassIn memory of Clementine WhinneyIn memory of Darren KeebleIn memory of Glenys Margaret MonottiIn memory of Janet PurcellIn memory of Jean McNallyIn memory of Lauren PilkingtonIn memory of Maddison Jayde GardnerIn memory of Noah HopkinsIn memory of Scarlet SoutarIn memory of Sue TomlinsonIn memory of Suzanne SeddonIn memory of Xavier James Noble Dev

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Fencing People may not know that I am a fencer. It’s a very physical sport, but there are a lot of mind games involved.

Childhood I was born in Sydney but my parents are from Cyprus. They came here in the mid-50s. They are proudly Australian but maintain their roots with Cyprus.

Member of the Order of Australia I was awarded the AM in 2010 for my services to genetics and in particular paediatric genetics. These are my sons, Thomas and Callum.

Toronto From 1990 to 1992 I lived in Canada and worked at The Hospital for Sick Children in Toronto as a clinical fellow, and also got some more laboratory experience.

Italy My wife Catherine and I love travelling in Italy, especially walking tours. Our favourite place to walk is the Dolomites, where this photo was taken in 2011.  

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Professor John Christodoulou AM joined MCRI as the inaugural Chair of Genomic Medicine in 2016. However, it’s not his first stint at the Institute.

Prof John Christodoulou is full of surprises. The internationally-renowned geneticist and researcher returned to MCRI in 2016, the Institute where he first worked from 1986 to 1990 under the mentorship of founder, Professor David Danks.

“At the time, Melbourne was considered the place to be to train in genetics and metabolic disorders,” he explains.“ It is wonderful to be returning to continue Prof Danks’ legacy.”

Born and raised in Sydney, Prof Christodoulou obtained his medical degree at the University of Sydney. He has led a distinguished career, including 18 years as Head of the Western Sydney Genetics Program, based at The Children’s Hospital at Westmead.

His new role, a joint appointment between MCRI and the University of Melbourne Department of Paediatrics, will drive the integration of genomics into clinical practice on the Melbourne Children’s Campus and beyond.

Prof Christodoulou has witnessed first-hand how advances in genetics can benefit families with children affected by these conditions. One of his main research areas is Rett syndrome, a nervous system disorder mostly affecting females, where babies develop normally for about six months before deteriorating. They lose skills they have learned, the purposeful use of their hands and the ability to walk and to talk.

“Over time these girls develop severe intellectual disability. If they walked or were able to communicate, they lose these abilities and don’t regain it. It’s devastating,” he says.

With a colleague, Prof Christodoulou established the first Rett syndrome multi-disciplinary management clinic in the country.

He also led a world-first study identifying one of the genetic causes of a syndrome that overlaps with Rett syndrome and investigating the biological basis of the disorder. His team is now working on a potentially promising therapeutic for Rett syndrome.

Genetic testing for the syndrome in Australia emerged from his research and gave families some much needed answers. “One of the worst things families had to deal with was uncertainty about the diagnosis,” Prof Christodoulou says.

Identifying the genetic basis for a child’s disorder can also help parents plan their family. “Restoring reproductive confidence is a huge gain for families,” he adds.

Prof Christodoulou’s life outside work is equally fascinating. He is a fencer – and a good one, winning national and international medals. He took up the historical sword-fighting sport during university, serendipitously as it turns out, because that’s how he met his wife (she was scoring a bout and “couldn’t get my damn name right! Now she’s stuck with it,” says Prof Christodoulou). He still trains twice a week at the Victorian Fencing Academy at the North Melbourne Football Club. “I liken it to physical chess,” he says. “In a very short space of time, you have to work out your opponent’s strengths and weaknesses and then use them to your advantage.”

a brilliant mind

Son’s Wedding My son Thomas married Philippa on December 30, 2016. They are a good fit. It was a pretty relaxed affair. We are a close family.

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mcri rising starsSophia Frentz is a PhD student and one of two recipients of the MCRI Rising Star Award in 2016. She grew up in Tauranga, New Zealand and is a passionate advocate for women in STEM (science, technology, engineering and medicine).

Tell us about your research?I’m investigating mitochondrial diseases – diseases that occur when your cells can’t make enough energy. I’m particularly looking at Leigh Syndrome, which is an early-onset neurodegenerative disorder that typically causes fatality in childhood.

I’m comparing and contrasting different ways of modelling mitochondrial disease, using human cells like stem cells as a starting point. I hope my research will progress to the point where we can move forward the testing of potential new treatments for mitochondrial disease

PhD student Alex Sexton-Oates is one of two winners of the 2016 MCRI Rising Star Award. She studies paediatric central nervous system tumours and is an avid tea drinker.

Tell us about your research?I study paediatric central nervous system tumours, which despite being very rare are the second most common cause of death in Australian children. Specifically my research focuses on DNA methylation, a type of epigenetic mechanism, which we use to help us develop a better understanding of tumour biology. Potentially, we’d like to find ways to help clinicians give children and their families an accurate prognosis.

What does your average day at work look like? I always start work by making a cup of tea in my hideous 70s style mug that I stole from my parent’s house. I check emails, plan my day based on what’s left on my to-do list and have another cup of tea.

I like to set myself really achievable tasks, like ‘print application form’, it makes me feel very accomplished. Our lab tends to do short experiments that generate a lot of data, so I spend most of my days processing and analysing data – and drinking tea.

What do you enjoy about working at MCRI?I really love the building, but probably what I enjoy most is being part of the hospital environment. Research can often be very slow but I find being connected in some way to the patients is very motivating.

During my PhD, I’ve been lucky enough to work with the oncology and anatomical pathology departments at RCH, attending case discussions and post-mortems, which have continually inspired me.

Why did you choose a career in science?What appeals to me most is that it requires continual learning. I’ve always enjoyed studying. Working in science means I’m always learning about different diseases, biological mechanisms, experimental techniques and analysis methods.

A career in science also allows you to travel overseas, which I really enjoy.

What do you hope your research will ultimately achieve?Having just finished my PhD and being uncertain of what area of research I’ll work in next, it’s hard to have specific goals. But in general I hope by the end of my career I will have made a positive contribution to child health, no matter how small!

What do you enjoy doing when you’re not working?I love music so I like going to gigs and festivals. I also enjoy reading, baking and attempting to be artistic. Right now I’m working on a paint-by-numbers of “Elephants at a watering hole” (it looks nothing like the original unfortunately).

What advice would you give to other young scientists, including women?My best advice would be to be confident in your abilities. Of course being new to research means we have limited knowledge and experience, but often we can be dismissed or ignored just because we’re young women. Be confident that you’re intelligent and that you might just have a good idea that deserves to be heard.

because at the moment, there are no current treatments that show any clinical benefit. We work with the Australian Mitochondrial Disease Foundation and this allows us to meet patients; observing children and families affected by these debilitating conditions provides a lot of motivation to improve their lives in any way that I can.

Why did you choose a career in science?I was always going to be a scientist – my mum takes great pride in regularly pulling out something I wrote when I was four saying I was going to be a great scientist like Charles Darwin. It was illustrated. This particular childhood relic supports my decision not to choose a career in art.

I planned to focus on physics but in my final year of high school, I was selected to represent New Zealand in the International Biology Olympiad. As a result, genetics won the day, the degree and the countless hours of study and work.

My dad’s a town planner and my mum is a journalist and despite not being particularly scientific, they’ve always wholeheartedly supported my interest and love for science.

What do you hope your research will ultimately achieve?

I’m just happy if I put another building block in the pyramid of mitochondrial research. Whatever I do, as long as I do it and record it well, the people who come after me will be that much further.

After my PhD, I’m keeping my options open: I like solving problems. Check in on me in five years!

What do you enjoy doing when you’re not working?I’m currently enjoying my boxing classes. I like taking some time for me – video games, walks, visits to the art gallery or the museum, reading. I try to block out Sunday mornings to take myself out for coffee and read a book, although that can fall by the wayside.

What advice would you give to other young scientists, including women?Don’t let anyone tell you that you can’t. Be unapologetically passionate. Say yes to things. Later on, learn to say no. Spend time figuring out what you like, and don’t freak out if that changes. Be ready to fight for yourself, because nobody else will. Know you’re brilliant and don’t be afraid of asking questions.

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The recommendations

• Reframe the place of adolescent health and wellbeing in health, economic and education policy.

• Set clear objectives based on national and local needs.

• Use social and digital media and school and community-based delivery, to reconfigure health services towards universal health coverage.

• Engage more young people – they are powerful agents for social change and their own health and wellbeing.

• Invest in more research, training, financial and technical systems to grow knowledge.

landmark lancet

Pictured: Professor Susan Sawyer and Professor George Patton

A landmark publication in the prestigious journal The Lancet in 2016 signalled a turning point in how the world understands adolescence.

Our Future: Commission on adolescent health and wellbeing Chair Professor George Patton explains how, due to previous under-investment, it was “no surprise” to see major gaps in knowledge about adolescent health issues.

“It is profound, when compared with other areas of health,” he says.

“There are 1.8 billion adolescents in the world now – almost 30 per cent of the population. It’s the biggest generation of adolescents there will ever be in human history.”

Why this matters, MCRI researchers Prof Patton and co-author Professor Susan Sawyer explain, is that it’s during adolescence that the foundations for health, education and other future life outcomes are laid. On a physiological and psychological

level, it’s also the time when parts of the brain underpinning mental health and emotional wellbeing are being shaped.

The Commission report argued that investing in adolescent health has the potential to deliver “triple dividends” of benefits today, into adulthood and for the next generation. It included six recommendations for comprehensive and integrated action around adolescent health.

“Adolescents and young adults are themselves central actors in creating their health and wellbeing,” Prof Patton explains. “So it was also essential that this work reflected their views.”

The Commission was led by Prof Patton and Prof Sawyer at the Centre for Adolescent Health, a joint venture between MCRI, the Royal Children’s Hospital and the University of Melbourne. The collaborative project involved University College London, the London School of Hygiene and Tropical Medicine, Columbia University and the University of Washington.

After the launch of the report at University College London in May 2016, Prof Patton and Prof Sawyer travelled to Washington DC and Seattle for events hosted by institutions

including USAID, World Bank and the Bill and Melinda Gates Foundation. They also presented the findings at the 2016 World Health Assembly, the forum that governs the World Health Organization (WHO).

This was the beginning of a massive international engagement program, which included regional events and forums, webinars and Twitter chats.

The Commission report was a headline feature at the Spring Meeting of the International Monetary Fund and World Bank in April 2017, and the report’s findings have been taken up by institutions including the WHO, UNICEF and the World Bank, and by major global donors.

To build on the report, the Lancet has committed to a Standing Commission that will run for at least five years, and will aim to focus action around implementing the 2016 recommendations.

“It’s the first time the Lancet has committed to a Standing Commission on any global health topic,” Prof Sawyer says.

“We see it as an opportunity to create an interdisciplinary academic community focused on adolescent health and wellbeing.

A challenge is ensuring that young people continue to be engaged in the process.”

Prof Patton describes the success of the report as the beginning of a new chapter, drawing similarities with the growth of maternal and child health programs and policies over the past 30 years.

“Adolescent health will become as big a field as maternal and child health is now,” Prof Patton says. “The Melbourne Children’s leads on this research now, but there’s stiff competition globally – so investing in the ‘next generation’ of researchers is essential to ensure we remain global leaders.”

2016 In 2016 The Commission was The Lancet’s most downloaded publication

389,000 people 389,000 people reached in a one-hour Twitter chat via @LancetYouth

21 events 21 Events around the world (London, Copenhagen, New York, Geneva, Washington DC, Seattle, Kampala (Uganda), Melbourne, Vancouver, Johannesburg (South Africa), Denver, Canberra, Beirut (Lebanon))

368 people / 45 countries Participated in webinar on adolescent girls’ diet and eating habits

The facts

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early birth blues

Pictured: Radford White with twins Maisie and Rupert. Researcher Dr Carmen Pace

MCRI’s research on rates of depression and anxiety among parents of premature babies highlights ways for mums and dads to navigate through this turbulent time.

Marketing professional Radford White was at work when he received the call from his pregnant wife at the hospital, where she was having her 30-week scan. One of their unborn twins was struggling to survive. Through tears, she told him the babies would have to be born early, via emergency caesarean section the next day.

Radford sprang up, raced to tell his manager and made his way to the hospital. A half-empty cup of tea sat, abandoned, on his desk.

The twins’ diagnosis was frightening. One of the babies’ umbilical cord nutrients was flowing backwards, depriving him of sustenance.

Radford and his wife, Kirsten, spent that night with two Doppler machines moving over her belly, desperately tracking the twins’ heartbeats. The couple were in “complete fear of losing the twins,” Radford recalls. “We were awake the whole night. It was the longest night of our lives.”

Twins Rupert and Maisie were born the next day, at 29 weeks and six days gestation, and were admitted to the neonatal intensive

care unit (NICU) where a team of specialists began the vital work to save their lives.

“I remember standing there with this incredible feeling of overwhelming helplessness,” Radford says. “There was a primal part of me that wanted to push everyone away and help the kids. But there was nothing I could do.”

Radford and Kirsten, whose twins are now healthy three-year-olds, took part in a study led by MCRI investigating depression and anxiety in parents of babies born before 30 weeks.

The study led by MCRI’s Dr Carmen Pace followed 113 mothers and 101 fathers at the Royal Women’s Hospital every two weeks for the first 12 weeks, and again at six months after their babies’ birth, in the most detailed investigation of depression and anxiety in parents of very premature babies during the newborn period.

Dr Pace said understanding the mental health of premature babies’ parents is critical because parental depression and anxiety can persist and adversely impact parenting and attachment, and ultimately, child development.

The results, published in JAMA Pediatrics, found more than a third of parents of very premature babies struggled with depression and anxiety after their babies’ birth and more than one in five were still experiencing symptoms six months later.

The findings also revealed the fathers of premature babies had rates of depression

and anxiety similar to mothers, with more than one in three experiencing depression soon after their child’s birth.

“The findings demonstrate we need to be conscious of fathers’ wellbeing too,” said Dr Pace. “Most dads remain involved in the day-to-day care of their babies while they are in hospital and often juggle this with returning to work.

“We found both depression and anxiety decreased quicker in fathers who accessed support services during their hospital stay,” she said.

Radford found great solace during his family’s difficult time in the NICU by joining the Dad’s Group at the hospital where talking and supporting other fathers about their experiences was the norm.

“Part of the stress of being in that environment is that you don’t have a road map to negotiate it. You’ve never been there before. If you had a map you’d be able to follow it and have some confidence in the path you take. Having other dads there was really helpful. It was like a team and we backed each other to be the best dads we could be, given the circumstances.”

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the alcohol taboo

Pictured: Professor Jane Halliday (L) and Evi Muggli (R)

Professor Jane Halliday and Evi Muggli are delving deep into the unanswered questions around drinking alcohol during pregnancy – and what level of consumption, if any amount, is safe.

Women are often given conflicting advice about the harms of drinking alcohol during pregnancy. To ensure no harm is done to the unborn baby, national policies specify that the safest option is to abstain completely from drinking throughout pregnancy.

But many women – between 30 to 40 per cent – consume alcohol before realising they’re pregnant. Other women continue drinking, although at lower or moderate levels, perhaps believing it is not going to harm their baby.

The AQUA study – Asking Questions about Alcohol in Pregnancy – is led by Prof Jane Halliday, who began her long-standing career with MCRI more than 30 years ago. The study aims to improve the messages provided to women about drinking during pregnancy.

In 2016, Prof Halliday’s team, including Senior Research Officer, Evi Muggli, published the first results from this study. These initial findings showed that women who drank alcohol throughout their pregnancy tended to be in their early to mid-thirties, smoke, have a higher income and be well-educated.

Of the 1570 women who participated in the study, 41.3 per cent did not drink alcohol at all during their pregnancies. Almost one third drank alcohol in the first trimester only, most of whom stopped immediately when they discovered they were pregnant. Another third drank alcohol at some level throughout their pregnancy.

Women were asked if they drank on special occasions, which resulted in almost one in five women (18.5%) revealing they had episodes of binge drinking at special events.

“It’s important to know about these common drinking patterns,” Prof Halliday said. “It helps researchers, health professionals and policy makers develop more meaningful and targeted health messages about the importance of not drinking during pregnancy.”

However, the most important findings are yet to come. Researchers including Ms Muggli are poised to publish more findings in 2017, including an analysis of 3D facial images of about 400 babies in the study taken at age one.

Researchers are looking at facial shape because a child’s face can look quite different if exposed continuously to high amounts of alcohol in the womb. These characteristics can be used to help diagnose Fetal Alcohol Spectrum Disorder (FASD).

AQUA researchers have examined these photos using sophisticated computer technology and found very subtle signs of face changes, even if the mother drank only low or sporadic amounts.

The children have been followed up at age two to determine if there have been any developmental impacts. Findings on the two-year-olds will also be published in 2017.

The researchers hope to follow the children up again at school age, because this is when any cognitive and other developmental problems become more apparent.

“We want to improve the messages provided to women and encourage people to better understand the risks that are associated with drinking in pregnancy,” Ms Muggli said.

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stair climb

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

The loyalty and generosity of our donor community has never been more evident than in MCRI’s landmark 30th year.

The support shown in the past 12 months by individuals, families, community groups, trusts, foundations and organisations continues the strong legacy of philanthropy built over the past three decades at the Institute.

We were delighted to launch our Council of Ambassadors, a dedicated group of senior women leaders and representatives of Australia’s major Trusts and Foundations, who actively advocate for a better world for all children - Dame Professor Marie Bashir AD CVO, Dame Quentin Bryce AD CVO, Janet Calvert-Jones AO, Paula Fox AO, Jean Miller, Ros Packer AC, Lady Primrose Potter AC, Jeanne Pratt AC and Frances Underwood.

As part of the celebration of our anniversary year, we released our pure white Brilliance Rose to mark this special milestone in recognition of Dame Elisabeth Murdoch.

Our corporate partners, Big W, BUPA, News Corp, Foxtel and Nova assisted us to spread our message far and wide. Ace Radio and Macquarie Radio also contributed significant in-kind media support.

Through special celebrations and in memory of loved ones, through community events large and small, every single dollar raised has gone directly to our research programs.

Your philanthropy has encouraged others to get involved. You have helped knit our community together. You have assisted our researchers to save the lives of thousands of children.

Thank you.

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 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, Dahlia Sable, Kate Mohr. 9. Brilliance Rose. 10. Joan and George Lefroy.

your support

“The breadth of MCRI’s research is remarkable and has a global reach,” he said. “It was a perfect fit for the Firefighters Charity Fund to select MCRI as the 2016 charity partner for this event.”

Mr Axup said during the lead up to the stair climb, several colleagues revealed a personal connection to MCRI. A fellow firefighter lost her brother to Menkes syndrome, a condition that has been under the microscope at MCRI. The Institute’s founding director, Professor David Danks, discovered the disease was linked to copper absorption.

Another colleague, Gippsland firefighter David Ward, was motivated to join by his son who has fragile X syndrome. MCRI is a world-leader in fragile X research.

Firefighters connected with their communities and their imaginations to raise funds beyond asking for sponsors. Trivia nights, sausage sizzles, trash and treasure markets and even

a lucrative project recycling car batteries contributed to individuals and brigades competing for the title of highest fundraiser.

“I just love that grass roots element of fundraising that engages the community. That’s pretty special,” Mr Axup said.

Community fundraising events like the Melbourne Firefighters Stair Climb are incredibly important to MCRI’s ability to change children’s lives. Money raised is used to seed-fund new and exciting projects, which, once established, have a proven track record of attracting further funding.

Imagine the gruelling task of climbing 28 flights of stairs of an inner city high-rise building. Now imagine attempting this wearing 25kg of protective firefighting clothing and breathing apparatus.

This is exactly what more than 500 firefighters from Australia, New Zealand and the US achieved at Melbourne’s Crown Metropol on September 3, 2016, raising vital funds for MCRI in the process.

The Melbourne Firefighters Stair Climb, which simulated the actions firefighters would carry out at a high-rise building fire, galvanised Australian and international firefighters to raise funds for MCRI’s child health research.

Event manager, Leading Firefighter Steve Axup said the firefighting community is a tight-knit family unit, with many of the participants parents themselves. A fundraiser for child health struck a strong chord with these families, Mr Axup said.

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3534

tomorrow’s cures need your support today

One of the most life-changing ways you can 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.

“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 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.

the gift of giving

Pictured: Elliott

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

3736

Consolidated The Company

2016 2015 2016 2015

$ $ $ $

Revenue from research & clinical activities 110,735,347 106,781,072 85,174,016 82,715,498

Depreciation & amortisation (6,997,696) (7,622,318) (5,717,205) (6,488,673)

Other expenses for research & clinical activities (120,308,207) (112,773,767) (96,130,015) (90,906,497)

Surplus/(Deficit) from research & clinical activities (16,570,556) (13,615,013) (16,673,204) (14,679,672Donation, estates & bequest & fundraising income 16,061,142 13,508,384 16,061,142 13,508,384

Fundraising expense (1,669,579) (1,756,521) (1,669,579) (1,756,521)

Net surplus obtained from Fundraising Activities 14,391,563 11,751,863 14,391,563 11,751,863

Net Finance income/(expense) 3,296,470 4,178,254 3,202,595 4,055,761

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 to profit or loss:

Net change in available for sale financial assets 610,687 (299,827) 610,687 (299,827)

Total comprehensive surplus for the period 1,728,164 2,015,277 1,531,640 828,125

statement of comprehensive income as at 31 december 2016

financials at a glance

Revenue 2016

$ (Mil)

2015

$ (Mil)

Government and other research grants

67.46 64.36

Clinical services 25.66 24.19

Donations, fundraising and bequests

16.06 13.51

Finance income 3.30 4.18

Contract research and clinical trials

8.38 8.46

Other research income 9.24 9.78

Total revenue 130.10 124.47

52% Government & other research grants

20% Clinical services

12% Donations, fundraising & bequests

3% Finance income

6% Contract research & clinical trials

7% Other research income

Expenditure 2016

$ (Mil)

2015

$ (Mil)

Research expenditure 80.69 74.12

Clinical services 25.46 23

Fundraising 1.67 1.76

Administration 8.31 9.98

Facility, technical and scientific services

12.85 13.3

Total expenditure 128.98 122.15

63% Research expenditure

20% Clinical services

1% Fundraising

6% Administration

10% Faculty, technical & scientific services

3938

Consolidated The Company

2016 2015 2016 2015

$ $ $ $

Current assets

Cash and cash equivalents 22,669,583 28,337,576 17,281,364 18,843,901

Trade receivables and other assets 8,266,841 8,799,703 6,231,801 6,322,016

Other investments 29,717,440 21,669,314 24,139,369 21,102,407

Total current assets 60,653,864 58,806,593 47,652,534 46,268,324

Non-current assets

Trade receivables and other assets 59,024,277 60,365,738 59,024,277 60,365,738

Other investments 46,601,994 43,644,171 46,601,994 43,644,171

Property, plant & equipment 13,847,057 15,114,627 11,884,264 13,878,351

Intangibles 1,234,202 1,990,346 - -

Total non-current assets 120,707,530 121,114,882 117,510,535 117,888,260

Total assets 181,361,394 179,921,475 165,163,069 164,156,584

Current liabilities

Trade and other payables 29,662,759 31,059,216 27,066,384 28,795,540

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

Non-current liabilities

Employee benefits 2,057,996 1,817,724 1,676,371 1,474,195

Total non-current liabilities 2,057,996 1,817,724 1,676,371 1,474,195

Total liabilities 44,797,094 45,085,339 37,600,855 38,126,010

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

statement of cash flows as at 31 december 2016

statement of financial position as at 31 december 2016

Consolidated The Company

2016 2015 2016 2015

$ $ $ $

Cash flows from operating activities

Patient fees received 22,784,084 20,767,106 - -

Government and other grants received 70,521,791 65,813,290 64,410,098 59,371,752

Donations received 15,537,404 13,513,921 15,532,544 13,508,384

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

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

Cash paid to suppliers and employees (122,634,929) (115,298,245) (97,272,151) (93,242,414)

Net cash provided from/(used in) operating activities 5,779,700 6,060,349 3,498,934 3,022,839

Cash flows from investing activities

Investment income received 2,513,884 2,511,227 2,638,079 2,388,732

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)

Net cash (used in)/from investing activities (11,513,898) (5,157,870) (5,127,676) (4,495,425)

Net increase/(decrease) in cash and cash equivalents (5,734,198) 902,479 (1,628,742) (1,472,586)

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

Effect of foreign exchange on opening

cash balances 66,205 976,436 66,205 976,436

Cash and cash equivalents at 31 December 22,669,583 28,337,576 17,281,364 18,843,901

4140

message from the Chairman board of directors 2016

Mrs Suzi Carp (Chairman)

Mr Simon Rothery (Deputy Chairman)

Mr Steven Casper

Dr Charles Day

Mr Bruce Grey

Mr Patrick Houlihan

Professor Christine Kilpatrick

Hon Rob Knowles AO

Mr Ian Miller

Mrs Kate Mohr

Mrs Sarah Murdoch

Professor Paul Monagle

Professor Kathryn North AM

Mrs Judy Paterson

Mr Paul Rayner

Mr Jason Yeap OAM

It is such an honour to be writing this message to you as Chairman of this great Institute.

MCRI, now in its 30th year, has achieved so much in the last three decades and 2016 was no exception. Our dedicated researchers, once again, have proven the profound impact their work has on the lives of children everywhere. Our home might be rooted in Melbourne, but our work transcends borders and our reach literally extends all the way around the globe. I’m humbled to report that the progress we’ve made this past year will continue to not only save lives, but to transform the lives of millions.

The highlights of the year, for me, are diverse, from our work towards what will be a cure for deadly peanut allergy, to our major stem-cell breakthroughs in the treatment of blood diseases and cancers, to our evidence-based research supporting pregnant women and new parents give their children the best start in life. Diverse projects, yes, but all sharing one commonality that is discovering solutions to some of our most intractable challenges that affect so many of our children.

When it comes to bringing healthcare into the digital age, we’re also on the cusp of some very exciting discoveries. In 2016,

the Board continued their commitment to advance our commercialisation strategy. This work will ensure MCRI can progress its breakthroughs internationally and accelerate research into treatments and products. We can’t do any of this alone, however.

This year’s achievements would not be possible without the generosity of our supporters. In 2016 our fundraising and donor contributions continued to grow while being complemented by our success in attaining government and other grants - a true testament to the quality and importance of our work, particularly in this highly competitive environment.

This anniversary year has also provided me an opportunity to reflect on my own involvement with MCRI. I was introduced to the Institute more than 16 years ago by our former chairman Laurie Cox. One of the things I loved most then, and now, is that within these walls all children are treated equally. It is our practice to embrace diversity and inclusiveness - and this is something we should all be very proud of.

Children truly are at the heart of everything we do and I am constantly inspired by the humanity and greatness that exists here. The shared sense of unity, curiosity, purpose, courage and empathy is reflected in all our endeavours. Our visionary founders, Professor David Danks and Dame Elisabeth Murdoch, embodied these

values and their wonderful legacy has been vigilantly continued by every leader, including our extraordinary Director, Professor Kathryn North.

The list of genuine contributors to our 30-year journey is endless - our past and current directors, the extraordinary members of our Development Board, our esteemed Council of Ambassadors, supporters and above all, our inspirational researchers.

On behalf of the staff, the researchers and the MCRI Board, I sincerely thank you all for your support in 2016. We hope you’ll stay will us on this wonderful journey as we continue to pursue the ambitious road map set by Professor North and her executive team in 2017.

Mrs Suzi Carp

MCRI’s world-class researchers make a real difference to children’s health.

MCRI is the largest child health research institute in Australia and one of the top five worldwide. Our team of more than 1500 talented researchers is dedicated to making discoveries to prevent and treat childhood conditions. Many of our researchers are also clinicians at the Royal Children’s Hospital in Melbourne. Their research is informed by the problems facing their patients but it also means when a discovery is made, this is quickly transformed into practical treatments for children in the hospital.

We research health conditions including diabetes, allergies, asthma, premature birth and mental health problems, which are on the rise in our children, and conditions including cancer and genetic disorders that rema in unsolved. We study the health of communities to understand what factors influence child health at the population level and research common infections and immune conditions both locally and globally.

We are one of the only research institutes in Australia to offer genetic testing to find answers for families of children with previously undiagnosed conditions, using the latest genetic sequencing technology. 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.

We kindly thank photographers Peter Casamento of Casamento Photography and Julian Kingma. We would also like to thank News Corp Australia for printing this report.

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