Annual Report 2013 – 2014

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Contents Our Mission

Our mission is to be the leading centre for melanoma research, clinical care and training in the world and to use this position to prevent melanoma and find a cure.

Melanoma Institute Australia (MIA) is a non-profit organisation dedicated to preventing and curing melanoma through innovative, world-class research, treatment and education programs. Based in the Poche Centre, the world’s largest melanoma research and treatment centre, MIA relies on the generosity of individuals, organisations and government funding to continue its ground-breaking work into this potentially devastating cancer.

Front cover: “I wish kids would realise how dangerous the sun can be. Make sun-smart decisions, live your youth and make it count.” 16-year-old MIA patient, Paige Howarth.

Chairman’s Report

Director’s Report

Board of Directors

Our Female Leaders

Senior Management Team

Our Reach

The Year in Review

Research Highlights

Saving Our Next Generation

Our Research Assets

Specialists of the Future

Multidisciplinary Care

Melanoma March 2014

Snapshot of Our Community Events

Schools Program

Supporting Our Patients

Part of Our Family

Our Supporters

Our Contibutors

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Preventing people dying from melanoma is our ultimate goal. Stage 3 melanoma patient Kyle Howle is participating in an exciting new clinical trial to address that issue. By giving therapies to high-risk stage 3 melanoma patients that have proven to be effective in stage 4 patients, we hope to prevent metastatic melanoma from ever occurring. This randomised trial of the drugs versus standard care will potentially make a huge impact on the death rate of melanoma.

“I am confident that the treatment

I have received at MIA gives me the best possible

opportunity to see my young son grow up for years to come, and for that I am forever

grateful.” Kyle Howle, MIA patient

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The past year has been of one of growth and development for Melanoma Institute Australia (MIA), both in terms of the organisation as a whole and our research outcomes. We have continued to make substantial headway, particularly in the field of medical oncology and play a pivotal role in the development of new therapies that are making a real difference to the lives of patients with melanoma.

Patients continue to be our central focus at MIA, as it is they who ultimately drive the research and we are sincerely grateful for their commitment and entrusting us with their health. Two of our melanoma patients who have been a big support to us this year are stage 3 patient Jay Allen and stage 4 patient Andrew Rust. The pair walked from Sydney to Melbourne to raise awareness of melanoma and funds for our research. The outstanding $160,000 that was raised from their event, 900KMFORACURE, was used to set up an important clinical trial that will change the way advanced melanoma patients with brain metastases will be treated in the future.

Thanks to the dedication of the melanoma community, our 2014 Melanoma March was also a great success, with 16 marches being held nationally and raising $530,000 for melanoma research, specifically for the brain metastases trial. This is a testament to how when we all work together, we can make a real difference.

It is an extraordinary privilege to be leading the Institute. We have a fantastic group of skilled clinicians, researchers and support staff that have evolved from our long history as the most significant melanoma group in the world. In August 2013, Prof John Thompson AO received the Premier’s Award for Outstanding Cancer Research, A/Prof Georgina Long received the award for Outstanding Cancer Research Fellow and Dr Pascale Guitera was awarded the Wildfire Award. In addition, in May 2014, Prof Thompson was ranked as the number 1 melanoma expert in the world, and pathologist Prof Richard Scolyer was ranked at number 9. This is just a small representation of the many brilliant and passionate people we have here at MIA who are dedicated to finding a cure.

Without the vision and commitment of our benefactors, Greg Poche AO and wife Kay Van Norton Poche, we simply could not exist as the world-leading Institute we are today. In addition to the initial donation of $40 million which funded the development of the Poche Centre, we continue to receive generous support from the Poche family to cover the overheads associated with running the institute. As a result, every dollar raised supports our research and education activities.

I would like to thank my fellow directors and members for their continued commitment and passion to ensuring the Institute continues to thrive and make a difference to the lives of patients with melanoma.

Finally, I must acknowledge our supporters, patrons and partners, as without their generous support, we simply couldn’t exist.

Thank you for helping us in the fight against melanoma and our search for a cure.

Reg Richardson AM Chairman Melanoma Institute Australia

Chairman’s Report“MIA have done more for me than just save my life.” Michael Birchall, MIA patient

Melanoma survivor Michael Birchall had his world turned

upside down in 2012 when he received news that the lump on

his head was melanoma, and that it had also spread to his lungs. Michael is currently on a PD-1 clinical trial and is doing well.

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I am pleased to report that once again Melanoma Institute Australia has had a productive and successful year in research and publication in scientific journals. At the same time, the development and testing of exciting new medical therapies based on MIA’s research has enabled us to make a difference to the lives of melanoma patients.

We are now seeing the results of research which are transforming advanced melanoma from an often fatal disease to a manageable condition, as is the case for other other chronic diseases in the community such as asthma, diabetes or HIV. Sadly, this is still not the case for some patients with advanced melanoma. Further research is needed.

ResearchOur recent research highlights include the long-awaited publication of the MSLT-I Clinical Trial, a study assessing the value of sentinel lymph node biopsy, which amassed a huge amount of data over the past 20 years. The results of this trial were published in the New England Journal of Medicine and confirm the accuracy of sentinel lymph node biopsy as a staging tool for melanoma patients. It also indicates a substantial survival benefit for patients with intermediate-thickness primary melanoma who have a positive sentinel node biopsy procedure followed immediately by complete node clearance in the affected area.

Other research highlights include the positive results of a clinical trial showing the efficacy of targeted combination drug therapy in patients with advanced melanoma who have a BRAF mutation and inoperable disease.

In the past 12 months, our researchers have been invited to present at more than 60 scientific meetings all over the world, including 15 presentations at the American Society of Clinical Oncology’s Annual Scientific Meeting in Chicago.

PublicationsDuring the year, the Institute has published an unprecedented 176 research articles in highly- respected journals, indicating the quality and breadth of research that is being undertaken at MIA. This is our most successful academic year yet. As our patients know, advances in medical treatment are rarely the

result of a ‘light bulb’ moment but usually result from painstaking research, clinical trials and peer-reviewed publication of the outcomes of these studies.

Genome ProjectThe genome project, a $5.5 million study which we launched in 2012 with the aim of identifying at least 99% of the genes that cause melanoma, is beginning to show results, with some new treatable mutations having been identified already. The results of this study have been included in the prestigious International Cancer Genome Consortium and MIA’s Professor Graham Mann will now join the steering committee of that group.

Other developments over the past 12 months include the appointment of Professor Richard Scolyer as the Vice President for the American Joint Committee on Cancer’s Melanoma Staging Taskforce. This taskforce will oversee the updating of the international melanoma staging system – a critically important system that guides the diagnosis of every melanoma patient. Our Melanoma Research Database, the largest collection of melanoma data in the world, contains a significant amount of information that will assist in updating the staging system.

On the basis of our productivity and impressive publication record, we are pleased that we have been able to attract support for our research program and specific projects from national and state bodies such as the NHMRC, Cancer Australia, Cancer Institute NSW and the Cancer Council NSW, as well as ongoing support from the Melanoma Foundation of The University of Sydney.

However, we still rely heavily on our individual and corporate supporters to provide additional funds to maintain the momentum of our research effort.

We simply could not survive without this support and I extend my heartfelt thanks to you, our supporters, for your generosity and commitment to our endeavours to provide better treatment and outcomes for our patients.

Professor John Thompson AO Executive Director Melanoma Institute Australia

Director’s Report

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Reg Richardson AM Chairman

“MIA is doing such wonderful things for humanity and it is an honour to be involved. Every day I hear marvellous stories about the achievements of people within the organisation and the work that they are all doing. Everyone pulls as a team and it doesn’t get better than that.”

Reg Richardson was appointed as Chairman of MIA in 2007. He has owned and managed diverse businesses predominantly involved in service industries throughout his career. Reg is involved with a number of philanthropic organisations including MIA, Friends of the Mater Foundation, and the Poche Centre of Indigenous Health at The University of Sydney, Flinders University, the University of Melbourne, University of Western Australia and the University of Queensland. Previously, Reg has served on the boards of the Museum of Contemporary Art, the Art Gallery of NSW Foundation, the Mercy Foundation and the Ted Noffs Foundation. He has shown himself to be an invaluable member of these groups, raising over $120 million.

In 2007 Reg was made a Member of the Order of Australia for service to the visual arts as a supporter, patron and collector, and to the community through a range of social welfare and medical research organisations. In 2013 he was made an Honorary Fellow of The University of Sydney for a wide range of philanthropic activities.

Professor John Thompson AO Executive Director

“I am always inspired by the courage and willingness of our patients to participate in clinical trials, which may be a commitment for many years. Their generosity of spirit is amazing, and their determination to find a cure for melanoma continually encourages me (and the rest of the MIA team) to do the same!”

Professor John Thompson is both the Director of MIA and Professor of Melanoma and Surgical Oncology at The University of Sydney. He was appointed to the Board of Directors as a Non-Executive Director upon inception of the company in 2007. He is author of over 650 peer-reviewed articles and holds positions on the editorial boards of several international journals. Prof Thompson is a past President of the International Sentinel Node Society, and was Chairman of the Australian and New Zealand Melanoma Trials Group until 2014. He is also a member of the Melanoma Staging Committee of the American Joint Committee on Cancer and chairs the Working Group to update the Clinical Practice Guidelines for the Management of Cutaneous Melanoma in Australia. Prof Thompson was made an Officer of the Order of Australia in 2014, “for distinguished service to medicine in the field of oncology research, particularly melanoma, to international and national professional organisations and to medical education.”

Associate Professor Jonathon Stretch AM Deputy Director

“It is an extraordinary privilege to be a member of MIA. The unifying passion within the Institute is a shared goal to profoundly improve the care of melanoma patients. The spirit of collaboration is truly remarkable and quite unique to MIA.”

Associate Professor Jonathon Stretch has been the Deputy Director of MIA since its evolution in 2007 from the Sydney Melanoma Unit. He was one of the founding Board of Directors at that time. A/Prof Stretch undertook his surgical training in Sydney becoming a Fellow of the Royal Australasian College of Surgeons (Plastic Surgery) in 1987. Thereafter he was Overseas Fellow at the Radcliffe Infirmary and Research Fellow in the Nuffield Department of Surgery, Oxford. His doctoral research investigated the local dissemination of melanoma. He was appointed to Royal North Shore Hospital in 1991 and the Sydney Melanoma Unit and Royal Prince Alfred Hospital in 2002. He is Associate Professor of Melanoma and Skin Oncology at The University of Sydney. In 2012, he was made a Member of the Order of Australia in recognition of service to medicine and to the community as a plastic surgeon and oncologist and through MIA.

Garry Sladden

“The opportunity to be a part of the amazing MIA team has allowed me to gain an understanding of a disease of which I had little knowledge. I can now go out and spread the word about melanoma and hopefully make a difference in helping others take action to prevent the spread of Australia’s national cancer.”

Garry Sladden was appointed as a Non-Executive Director of MIA in April 2011. Garry is a business and strategic adviser who has a diversified business background in the areas of real estate, private equity, business operations, banking and finance, and equity raising, having held the position of General Manager Operations at Consolidated Press Holdings for six years and more recently the role of Group Operations Executive for a real estate investment, development and funds management group. Garry is Non-Executive Chairman of Folkestone Limited, Chairman of Ashton Manufacturing Pty Limited and Clarius Group.

Jennifer Elliot

“I am honoured to be involved with MIA as it focuses on improving outcomes for melanoma patients. The support of our many benefactors, together with the outstanding skills and professionalism of our staff, has enabled us to be at the forefront of research, treatment programs and education, both here in Australia and internationally.“

Jennifer Elliott was appointed as a Non-Executive Director of MIA in August 2012 and Chair of the Finance Committee in March 2013. Jennifer has broad international experience in the financial services industry, with a particular focus on business strategy, corporate governance and regulation, and human resources. She previously held various roles within Moody’s Corporation for 20 years. Prior to joining Moody’s, Jennifer worked as a banking and finance lawyer in Sydney. She has degrees in English Literature and Law from The University of Sydney, and a Master in Asian Business Studies from SOAS at London University. In addition to her roles at the Institute, Jennifer is a member of the Board of the Clarius Group and a Volunteer Ethics Teacher for Primary Ethics NSW.

Board of Directors

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“Seeing the quick and effective response that radiation therapy can provide to melanoma patients makes me passionate about my work at MIA.”

Radiation oncologist A/Prof Angela Hong is interested in advancing complex radiation therapy techniques in anatomically-challenging locations. In addition, she is investigating the benefit of radiation therapy through clinical trials.

“Having access to the best equipment and expertise at MIA contributes to early detection of melanoma and the best possible outcome for patients.”

Dermatologist Dr Pascale Guitera follows high-risk patients for melanoma and skin cancers to ensure the earliest possible diagnosis. Her research focuses on developing new non-invasive diagnostic tools to minimize incisions and help map out areas of concern before complex surgery.

Our Female Leaders“Working with a motivated and committed team of researchers and clinicians, and working with patients who directly contribute the answers to the melanoma problem by participation in our research, is what I value about MIA.”

Medical oncologist A/Prof Georgina Long looks after patients with stage 3 and 4 melanoma and conducts clinical trials of novel drug therapies. Together with her colleagues, she examines melanoma tissue from patients on novel drug therapies to determine why some people respond to the drugs and why others don’t, and how these drugs can be combined to improve responses and survival.

“Working at MIA means being able to do what I love – surgery, helping people, collaborations with amazing clinicians in patient care and research, and solving difficult clinical scenarios.”

Surgeon Dr Robyn Saw is passionate about assisting patients with stage 3 melanoma, where the melanoma has spread to the lymph nodes. In addition to undertaking research into lymphoedema (a potential side-effect of surgery where swelling arises in the body) she is also passionate about quality-of-life issues and improving support for these patients.

The most innovative organisations understand that diversity is a strategic imperative. This value is demonstrated at MIA in our female leaders. From research and clinical care to senior administration and guiding vision, women in positions of leadership are fundamental to MIA’s current success and future growth.General Manager, Nicola Ware and Director, Jennifer Elliot

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Nicola Ware, General Manager

“My passion is research and it is a privilege to support the research undertaken at the Institute knowing each day we are helping melanoma patients live better and longer lives.”

Nicola was appointed General Manager of MIA in 2008, tasked with establishing the operational structure of the organisation. With a background in medical research, Nicola graduated from the University of Wollongong with a Bachelor of Biotechnology (Hons) and then completed a Master of Business Administration at Macquarie University’s Graduate School of Business. Prior to her current role, she managed Operations at Victor Chang Cardiac Research Institute.

Maria Gonzalez, Clinical Trials Operations Manager

“Working in clinical trials gives me an opportunity to combine my passion for helping people with cancer and their families whilst contributing to vital research.”

Maria earned her combined Bachelor degrees in Nursing/Arts and her Master of Health Science from The University of Sydney. She has 10 years of clinical experience in surgical nursing and for the last seven years has focused on clinical trial nursing. In her current role, Maria leads a team of trial nurses and science graduates who are responsible for the co-ordination of surgical, medical and radiation clinical trials at the Poche Centre and RPAH. Maria joined the Institute in 2010 and is currently working on adjuvant therapy clinical trials investigating the use of targeted therapies following complete lymph node dissection.

Janine Owen Koorey, Fundraising and Marketing Manager

“Every day I come to work inspired by the greatness of the people who are MIA. From clinicians, to researchers, to administration, to patients, to supporters, to partners – all are driving real and positive change for this and future generations of Australians. It’s a privilege to be part of this movement.”

Janine graduated from The University of Queensland with a Bachelor of Social Work, having already completed a Diploma in Public Relations earlier in her career. Janine has more than 14 years of experience in fundraising, marketing, events, partnerships, business development and public relations, with 10 years specialising in the in the Not-For-Profit Sector.

Libby Emmett, Clinical Trials Start-Up Manager

“I love working at MIA because I can help patients with melanoma gain access to new treatments that improve their quality of life. The last few years have seen incredible advances in treatment options available to patients and I’m excited to be a part of that.”

As a registered nurse with more than 20 years of experience working in oncology in Australia and the UK, Libby’s career has focussed on clinical trials. She has extensive experience working with patients in both the hospital setting and in the pharmaceutical industry. At MIA, Libby is responsible for developing and introducing new trials to the organisation, taking them from the feasibility stage to enrolment.

Sarah Allsopp, Financial Controller

“It is great to be a part of MIA with its talented researchers passionate about curing melanoma and giving patients real hope for a better outcome.”

Sarah joined MIA in 2010 as Financial Controller. She graduated from the University of NSW with a Bachelor of Commerce and is a Certified Practising Accountant. Sarah has also completed an MBA at the Australian Graduate School of Management. She has over 15 years experience working in the private sector, including roles in banking and finance.

Valerie Jakrot, BioSpecimen Bank Manager

“I find it exciting to actually see the progress of our research and how it is impacting patient care.”

Val started out as a registered nurse and then completed a Computer Science degree at The University of Sydney. Working in IT research at Westpac, Val gained a passion for research and completed a Masters of Commerce. Eight years ago, Val commenced working at MIA combining her passion for research and medicine, firstly in clinical trials working mainly on the MSLT-II surgical trial and then for the last 4 years as the BioSpecimen Bank Manager. Val manages a team of research staff across the Poche Centre and RPAH, and coordinates the consenting, collection and release of specimens (both blood and tissue) for research from patients seeing clinicians at MIA.

Jim McBride, Information Technology Manager

“Through the generosity of our patients, we are privileged at MIA to be able to work hard to provide both better care and the longer-term benefits of research. MIA is a truly unique place where the patient community, the care providers and information technology work in harmony to build a better future.”

After graduating from The University of Sydney with a BSc in Computer Science, Jim’s career began in information technology roles in the petroleum then insurance sectors. His passion for how information technology can make a difference in the health sector took him to the Garvan Institute as their inaugural Information Technology Manager in 1995, then joining us at MIA in 2013.

Senior Management Team

In order to enable our clinicians and

researchers to focus on what they do best, our Senior

Management Team works tirelessly in the

background to ensure that the Institute is

running smoothly.

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“MIA researchers, clinicians and patients are an integral part of our research. The high level of clinical trial activity at MIA enables research into the most promising new treatments, and working within a committed multidisciplinary team ensures our research is always focused on improving patient care.”Prof Helen Rizos, runs the Precision Cancer Therapy laboratory at Macquarie University and is focused on understanding why some melanoma patients have long-lasting responses to therapy, while other patients develop resistance and progress rapidly.

Professor Helen Rizos, research partner

Our Reach

MIA is proud to deliver world-class services in the following areas:

Research

Our research is focused on preventing melanoma with the ultimate goal of finding a cure, or at least making it a non-life-threatening treatable disease. Since the 1960s, MIA has published more than 900 papers on melanoma. In recent years, this work has led to major breakthroughs in treatment after decades of hard work.

Treatment

Patients benefit from the Institute’s multidisciplinary team approach to treatment and our world-renowned research. Our large patient numbers contribute substantially to international research in melanoma and, in return, the benefits are reaped by the patients.

Education

MIA is committed to inspiring the next generation of melanoma clinicians and researchers to continue the fight against melanoma. We offer a number of unique clinical and research-based fellowships where Fellows are provided with high-level training in melanoma under the supervision of multiple specialists. We also offer educational seminars to the medical community and members of the public.

Support

Through our dedicated Clinical Nurse Consultant (CNC) service, patients have the opportunity to speak to a trained individual about their disease, prognosis and what to expect. The CNC is a primary contact for patients and is on-call to answer questions from patients. The Institute has also developed Patient Information Packs and offers access to support groups for melanoma patients.

Advocacy

MIA is an advocate for all melanoma patients. We seek to represent all melanoma patients, clinicians and researchers to government. By representing the community’s need we hope to achieve an outcome for the community, having impact on the future of melanoma.

• Australia and New Zealand Melanoma Trials Group

• Concord Repatriation General Hospital

• Kolling Institute of Medical Research

• Lake Macquarie Private Hospital

• Macquarie University

• Nowra Outpatient Clinics

• QIMR Berghofer Medical Research Institute

• Royal North Shore Hospital

• Royal Prince Alfred Hospital

• Skin and Cancer Foundation Australia

• Strathfield Private Hospital

• St Vincents and Mater Health

• Sydney Adventist Hospital

• Sydney Day Surgery

• The University of Sydney

• The University of Newcastle

• Westmead Hospital

• Westmead Millennium Institute for Medical Research

We rely closely on the following organisations to

help achieve our goals:

The Year in Review

July 2013 – June 2014

7,500

melanoma

seen at MIA

38,752

peoplewalked through MIA’s front door

new melanoma patientstravelled from outside of Sydney to be treated at MIA

6 new clinical trials started in 2013 – 2014

25,000

in the last year

patients

now recorded in the

Melanoma

DatabaseResearch

patients

contributes to theBioSpecimen Bank

More than

10,000

people made a donation

community and online fundraisers *excluding Melanoma March

new Facebook friends this year

of liquid nitrogen wereused to maintain ourBioSpecimen Bank

60presentations

international scientific

2182

23415,600 litres

scientific research publications

176

about prevention and

early detection

students educated

have received a

Patient170 patients Information Kit

fellowsmentored at MIA

4 in surgical oncology, 1 in pathology

1 in medical oncology,

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“More than 25 years ago I decided that I would devote my working life to research. I thought there was a real chance that this would be the time that cancer would be beaten, and more than ever I’m convinced that this is actually happening.” Professor Graham Mann, Research Director

At the 2014 American Society of Clinical

Oncology (ASCO) conference, the world’s

largest oncology meeting with more than

34,000 delegates, our researchers made a

record number of presentations. We made...

Clinical trials of new drugs in melanoma continue to make major progress. Antibodies against the PD1 immune switch protein were shown to produce good responses in people with metastatic melanoma [NEJM, July 2013]. Ongoing work will test how long lasting these are, and how best to combine anti-PD1 with the other effective drugs already available.

Why and how do drugs stop working? Studies of tumour tissue from patients treated with anti-BRAF drugs revealed the complex ways melanoma cells can avoid them or recover, even after a very effective response [Clinical Cancer Research, January 2014]. One common problem was shown to be some special forms of abnormal BRAF, tested for in the clinic.

Our Melanoma Genome Projects solved some mysteries and posed some new ones. Sometimes melanoma arrives as a metastasis without any obvious starting point on the skin, so-called “occult” melanoma. We showed that the genetic damage in these melanomas is very similar to melanoma that starts in the skin [Pigment Cell Melanoma Res., Nov 2013]. So the original melanoma must have regressed by itself – something that has been long suspected.

We’ve been working on tests to show more clearly which melanomas are most dangerous and may need extra treatment with drugs after initial surgery. Testing a panel of genes in melanomas that have spread to local lymph glands, but removed by surgery, was shown to be 80–90% accurate in spotting the melanomas that were likely to still be a threat [J Invest Dermatol., February 2013].

Some people are at very high risk of getting a melanoma in the future. Our specialised research clinic for such patients showed how a simple strategy of examination every six months and tracking of suspicious moles using digital photography can deal efficiently with nearly all the new melanomas that arise [JAMA Dermatol., June 2014].

Melanoma that is running in families is one cause of high personal risk of melanoma. We have shown that in a few cases this is due to inherited mutation in a gene, POT1, that protects the end of our chromosomes [Nature Genetics, May 2014]. This was discovered using comprehensive sequencing of all genes in cases from these large families.

A landmark international study that commenced 20 years ago was published that confirmed sentinel lymph node biopsy as one of the most reliable predictors of whether a patient’s melanoma will progress [NEJM, February 2014]. We contributed almost half the patients to this study, known as MSLT-1.

Melanoma Institute Australia is making real discoveries that are advancing melanoma treatment. A few of our recent highlights include...

Research Highlights

...on advancements

in research that will

have a significant

impact on melanoma

and other cancers.

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With melanoma causing more deaths in young people aged 20–34 years old than any other cancer, it is crucial that researchers focus their attention on understanding what genes play a role in causing melanoma in the hope of improving outcomes for our youth.

Traditional treatments, such as chemotherapy and radiotherapy, can cause tremendous long-term damage to growing bodies, and so it is important to find new therapeutic targets.

After recently receiving a grant from the Sydney Local Health District to conduct the study, Postdoctoral Fellow, Dr James Wilmott, is hoping to discover early detection markers and treatment options that are specific to this age group.

Saving Our Next Generation

“New drugs that target genetic mutations specific to a patient’s melanoma look extremely encouraging,” Dr Wilmott says. “Unfortunately, young patients have been largely overlooked in this kind of research and subsequent drug development. This study will address this knowledge gap by extensively characterising all the gene mutations in blood and melanomas from adolescents and young adults with melanoma.”

This multicentre study is the first of its kind in the world. Data will be made publically available benefitting a range of research groups in Australia and abroad, and bringing together pathologists, oncologists, surgeons, epidemiologists, computational biologists and researchers to focus on youth melanoma.

In addition to developing new drug targets, uncovering common mutations in the blood will identify genetic mutations that predispose young patients to melanoma. This will provide a unique and inventive way to detect melanoma in young people and help them understand the benefit from changing their sun exposure behaviour or could undertake intensive skin screening to prevent and detect melanomas earlier, greatly reducing the incidence of advanced melanoma.

The data generated by the project will ensure that young melanoma patients are not left behind in innovations in personalised medicine, making a real difference to people in the prime of their lives.

“MIA has enabled me to gain experience and

knowledge from a diverse array of prominent melanoma

researchers and helped produce a well-rounded

education that has empowered me to integrate my research

from the laboratory to treatment clinics.”

Dr James Wilmott, Postdoctoral Fellow

Our patients drive the questions that lead to solutions.Research is what distinguishes MIA from a regular oncology clinic. But our research began almost incidentally in 1968 when Prof Gerry Milton from the Sydney Melanoma Unit commissioned Dr Helen Shaw, Senior Research Fellow in Surgery, to compile records of all patients treated for melanoma at Sydney Hospital and the Melanoma Clinic since 1957 to gain a better understanding of the disease. This was the beginning of our Melanoma Research Database (MRD). Once sheets of paper in a filing cabinet, then “high-tech” punch cards, the MRD has evolved into the world’s largest melanoma database, now computerised and containing over 38,000 patient records living in a custom, state-of-the-art digital data infrastructure. Since then the Institute has expanded its research assets, complementing the MRD with a BioSpecimen Bank and Clinical Trials Program.

These three core research areas underpin the translational research carried out here and at partnering research institutes throughout Australia. Specimens and data are made available to researchers all around the world to gain a deeper understanding of the causes, development, diagnosis and treatment of melanoma.

Our Research Assets Clinical Trials

After having negative results from routine genetic testing, stage 4 melanoma patient Trish Nugent (pictured here with her daughter Ro) had very little hope. Fortunately her oncologist, MIA’s A/Prof Georgina Long, was involved in an international research collaboration that meant she had access to genetic testing that is not typically done. The results revealed an unusual genetic anomaly – a BRAF translocation – which meant that Trish was suitable for treatment with a drug called a MEK inhibitor. She was the first patient in the world to receive this treatment which led to a 70% reduction in her tumours. Trish then became stabilised enough to receive PD-1 treatment and was the first person in Australia to receive the injection through the Compassionate Care program. More than 12 months on, Trish is living each day with an inspiring sense of hope and a contagious spirit for life. MIA continue to drive innovative research so that patients, like Trish, are given every chance to fight this devastating cancer.

“I’m nothing without the team at MIA and I hope

I tell them often enough!”

Trish Nugent, MIA patient

Clinical trials are the vital research link between scientific laboratory discoveries and the availability of new treatments. Our clinical research began in the late 1960s and since then the large number of patients willing to participate in trials has enabled us to make major contributions to changing how melanoma treatment is managed around the world.

MIA is recognised as one of the most active clinical research centres in melanoma of any type in Australasia, attracting sponsors and collaborative investigator groups due to the group’s ability to effectively recruit and retain patients to clinical trials while maintaining a high level of data integrity and quality.

Clinical trials are undertaken to examine all aspects of melanoma control including prevention, screening, diagnosis, treatment, health service provision, palliative care provision and the psychosocial impacts of melanoma. Our trial activity is concentrated around four key areas: surgical oncology, dermatology, radiotherapy, and medical oncology (using immunotherapies and targeted therapies).

Trials run at the Institute may be either sponsored by industry (pharmaceutical companies) or industry-independent (investigator-initiated). Approximately 40% of our trial activity is investigator initiated, ensuring we have one of the largest investigator-driven programs in Australia.

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We house the largest melanoma tumour bank in the world in our BioSpecimen Bank, with the oldest samples dating back to 1999. Each patient at MIA is invited to contribute their melanoma to our tissue bank to further our research.

Melanoma tissue and blood samples are utilised for ethically-approved research into melanoma and other skin cancers to find out more about its causes, development, diagnosis and treatment. The BioSpecimen Bank is supported by funds from the NHMRC and Cancer Institute NSW.

The BioSpecimen Bank was a major contributor to The Cancer Genome Atlas Project, a US Government–funded project to identify the genomic changes involved in more than 20 types of cancers, including melanoma. We contributed 100 samples out of a total of 250 melanoma cases to be analysed.

The $5.5 million Melanoma Genome Project, that was launched in 2012 with the aim of identifying 99% of all genes that cause melanoma, was made possible by utilising samples from our BioSpecimen Bank.

BioSpecimen Bank Melanoma Research Database

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Valerie Jakrot, BioSpecimen Bank Manager

The Melanoma Research Database is central to the academic success of the Institute. Maintained ever since the 1960s and migrated through a series of IT systems, this unique asset has captured comprehensive clinical information and histopathology data for over 38,000 melanoma patients.

The MRD is an invaluable national and international resource used to identify and extract specific sub-sets of data for particular clinical and research projects related to diagnosis, prognostic indicators and treatment outcomes in melanoma patients.

Research projects using information in the MRD cover a broad field of expertise including surgical and medical oncology, pathology, genetics, immunology, radiation therapy and diagnostic imaging. The knowledge gained from these studies assists in the management of melanoma patients around the world via publication in professional journals and presentations at conferences and scientific meetings.

PublicationsThe reputation of a research institute depends

upon its productivity, and a key measure of this is

the number of peer-reviewed articles published in

the international scientific literature. The publication

rate of MIA has increased exponentially since we

began, and many of these publications have made

important contributions to improving outcomes for

melanoma patients. This is further evidence of the

quality of research that we are undertaking at MIA.

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PhD student Hojabr Kakavand is researching the future of melanoma treatment. Under the leadership of world-leading melanoma pathologist Prof Richard Scolyer and medical oncologist A/Prof Georgina Long, second year PhD student, Hojabr Kakavand, is at the forefront of melanoma research. By using samples from the BioSpecimen Bank, Hojabr’s work is trying to understand how melanoma hides from the immune system’s surveillance that would normally seek and destroy cancerous cells. This research will have significant implications for the use of combinations of targeted therapies and immune therapies in treating metastatic melanoma patients where previously there was little hope of survival.

Specialists of the Future

As a world-leading tertiary institute, students are an integral part of MIA’s mandate to educate the next generation of doctors and researchers in the field of melanoma. With exposure to our multidisciplinary team and access to dedicated patients, our students and fellows join us on the forefront of melanoma research.

MIA offers a number of unique clinical and research-based fellowships in the fields of surgery, medical oncology, pathology and lab-based research. It is our hope that on completion, the Fellows will continue to play a key role in the global effort to provide the best possible care to melanoma patients, and to continue their career as clinical research academics.

Medical Oncology Clinical Research Fellow Dr Megan Lyle After developing an interest in melanoma during her medical oncology training, Dr Megan Lyle became our inaugural Medical Oncology Clinical Research Fellow in 2013.

Dr Lyle has been investigating the patterns of response and progression in patients treated with PD-1 antibody, a new melanoma immunotherapy. This research provides insight into how patients, and individual tumours, respond to treatment and has important implications for patient treatment and future research. Approximately 70% of patients have shown tumour stabilisation or shrinkage with anti-PD-1 therapy, which is a vast improvement over previous therapies.

Having completed her 12-month fellowship, Dr Lyle will now take the knowledge and skills she has gained from MIA to North Queensland in a new role.

Our fellowships are funded by

the generosity of community

members, passionate about

educating the next generation

of specialists.We are so

grateful for their support.

“By translating our findings to the clinical trial setting,

we are finally seeing improvements in long

term survival of metastatic melanoma patients.”

Hojabr Kakavand, PhD Student (right), pictured with Prof Richard Scolyer

2827

With some of the world’s greatest experts in melanoma under the one roof at the Poche Centre, MIA is able to facilitate treatment of patients through our affiliated clinics, translating our research efforts to ensure the best possible care is available for melanoma patients.

The most important aspect of treatment provided at MIA is its provision of integrated multidisciplinary care. This involves not only the surgeons who undertake surgical treatment of patients with primary melanomas and recurrent disease, but also dermatologists, medical oncologists, radiation oncologists, pathologists, radiologists, palliative care specialists, physiotherapists and oncology nurses, all with particular expertise and experience in the diagnosis and treatment of patients with melanoma.

A weekly multidisciplinary clinical review meeting fosters not only a strong spirit of unity and cohesion but also a high level of adherence to agreed treatment guidelines and clinical trial protocols. Challenging clinical cases are discussed by expert clinicians to ensure the best possible care is given for patients.

Multidisciplinary Care

“The opportunity to make a difference to our patient’s lives, even if it is just

putting a smile on their face, is something I treasure and try to do every day.”

Sherrie D’Souza, Practice Manager

“I’m proud to be part of an organisation where people come to receive

the best melanoma treatment by the top clinicians in the world.’

Trina Harbor, Practice Manager

29 30

Melanoma March 2014

Having both lost close

friends to melanoma,

Carolyn Seri from

Townsville and Karen

Ryan from Wollongong

are just some of

our volunteers who

organise Melanoma

Marches in their

local community.

We are so grateful

for the commitment

of our Melanoma

March Committees

for raising awareness

of melanoma and

supporting us to

find a cure.

What started in Manly, Sydney, as a local event to honour the memory of those who had been lost to melanoma and to raise vital funds quickly grew into a national initiative and the major annual fundraising campaign to support MIA. Established in 2012 by a local Sydney businessman who lost his 20-year old son to melanoma, Melanoma March has now spread across the country and continues to grow each year.

The country united on Sunday 23 March when 6000 participants took action against melanoma for Melanoma March 2014. This year, Melanoma March saw exponential growth, adding an additional ten march sites around Australia bringing our total to 16 events nationally. Through generous support from the community MIA, in collaboration with Melanoma Awareness Research Foundation (in South Australia) and Melanoma WA (in Western Australia), raised $530,000 for melanoma research.

Melanoma March is a month-long awareness campaign dedicated to raising funds and awareness for Australia’s national cancer. This year we saw not only the community walks take place around the country, but for the first time we welcomed BB Retail Capital and their Bake – Don’t Sunbake Campaign, as well as Raphael McGowan’s Cycling to March. Both these initiatives contributed to the tremendous amounts of funds raised through the month-long campaign.

Money raised in 2014 helped fund a world-first clinical trial initiated by MIA aimed at improving life outcomes for patients with brain metastases, which impacts upon approximately 50% of advanced melanoma patients. The trial was launched in October 2014 and will have a significant impact for melanoma treatment options around the world.

Townsville, QLDBrisbane, QLDTweed Heads, QLDBathurst, NSWBonny Hills, NSWCentral Coast, NSWManly, NSWNewcastle, NSWWollongong, NSWMelbourne, VICAdelaide, SAPerth, WAKaratha, WABunbury, WAOnslow, WADarwin, NT

Melanoma March went national this year with 16 locations in collaboration with other organisations.

31 32

900KMFORACUREHaving both fought their own individual battles with melanoma, friends Jay Allen and Andrew Rust were determined to find a way to raise funds for melanoma research. Their challenge: to walk 900kms from Sydney to Melbourne in just 16 days.

Despite freezing conditions, the pair, together with a full support crew, made great headway with their journey and kept in fine spirits, constantly encouraged by members of the community, and their generosity, along the way.

“When it gets tough, I think of the friends I've lost. They would have done anything to be able to have done this walk with me,” Jay said. Jay has lost 16 friends to melanoma in the past six years.

The two men set off from Sydney on 11 July 2014, and through blistered feet and fatigued legs managed to arrive at Melbourne's MCG on Saturday 26 July. Through their enormous efforts Jay and Andrew were successful in raising an amazing $160,000 for melanoma research. Funds raised from 900KMFORACURE will help fund a new clinical trial for patients with metastatic melanoma to the brain.

Cycling To MarchAfter losing his older sister Tess to

melanoma in June 2012, Raphael

McGowan decided he needed

to do something to honour

his sister and help friends and

family in their grieving process.

So Raphael rode 1900km from

Adelaide to Sydney in February

2014 raising awareness and funds

for melanoma along the way.

Raphael's journey saw him pass

through many regional Australian

towns and meet many people from

all different walks of life, raising

$65,000 for melanoma research,

treatment and education.

Snapshot of Our Community Events

Cyril BaldockAfter having a close friend diagnosed with

melanoma, 70-year-old Bondi Lifesaver Cyril Baldock decided he would set himself the ambitious

challenge of becoming the oldest man to swim across the English Channel. Cyril achieved this goal on 21 August, arriving on the French coast in 12hrs and

45mins. Through his amazing personal achievement Cyril raised much-needed awareness for melanoma through the significant media coverage generated,

while continuously encouraging people to donate to MIA, in total raising more than $13,500.

33 34

The amount of cumulative sun exposure in the first 15 years of life has been proven to lead to an increased likelihood of skin cancers as an adult, including melanoma.Educating young people on sun safety is the single most important thing that we can do to prevent our youth from getting melanoma. Melanoma is responsible for 8% of all youth deaths in Australia, with many more young people doing long-term damage to their skin and acquiring the disease later in life. This is why prevention is critical for our youth.

Our Schools Education Program is run by MIA Community Co-ordinator and melanoma survivor, Jay Allen. Having spoken to students at more than 30 schools during the year throughout NSW and VIC, Jay shared his personal story of melanoma and the importance of prevention and early detection.

“I had stage 3 melanoma that started on my left ankle and went into my groin,” Jay says. “There are always a few shocked faces when I share my story. It is important that the kids realise when it is more than just a mole. When a melanoma gets to only 1mm deep, the cells can break away and travel to other parts of your body. That is why early detection is vital for survival.”

In addition to sharing his personal story, students are also educated about ways to prevent melanoma and what to look out for when checking their own skin – vital messages that will make a difference to the future burden of melanoma.

Schools Program

“Hopefully a cure for melanoma can be

found soon. But for now, I am truly lucky.” Elizabeth Liu, MIA patient

35 36

Patient Information and Support PacksAfter identifying a need in the community for further support for melanoma patients, MIA developed Patient Information and Support Packs for people with stage 3 and stage 4 melanoma.

This free resource, launched in November 2013, was designed to accompany people through their journey, allowing them to keep track of important aspects of their care; provide information about diagnosis, treatment, and follow-up; and as a reference to further information and support resources when needed.

The response to these packs has been overwhelmingly positive, with patients commenting on the different ways the pack is useful, not only to them but also their families. This comprehensive pack includes a treatment guide for stage 3 or 4 melanoma based on the most frequently asked questions people have around this time. An organiser provides additional information and space to keep records, make notes or reflect on care, with relevant information about connecting with others and keeping well.

Consumer ForumA diagnosis of stage 3 melanoma can be a confusing and overwhelming time for patients. To address this need, we held our first consumer forum specifically for people newly diagnosed with stage 3 melanoma.

The aim of the forum, held in November 2013, was to address the psycho-educational needs of people who wanted relevant information and support following treatment for melanoma. Sessions on advances in melanoma treatment, lymphoedema, nutrition, communication and other topics were attended by over 40 patients and carers. Feedback regarding individual sessions was positive with many people reporting an increased understanding about the topics important to them. In addition, people appreciated meeting others in a similar situation, having time to chat informally with health professionals and gathering useful resources.

Support GroupsSupport is an essential part of life, especially during times of need. Support groups are available for melanoma patients and provide a great source of information and sense of comfort to patients, their family and friends. We currently hold monthly support groups in North Sydney, Wollongong and the Central Coast.

Supporting Our PatientsClinical Nurse ConsultantThe diagnosis of stage 4 melanoma is often an unbelievably difficult time for patients and their families. Melanoma is a very complex cancer and at times, unpredictable and aggressive. Having someone to provide ongoing advice, support and care on the journey is an invaluable resource that helps bridge the gap between patient and doctor.

Our Clinical Nurse Consultant, Anna Hoadley, provides this invaluable link and journeys with patients from their very first clinical consultation when receiving the news of a stage 4 melanoma diagnosis. When not in the clinic, Anna is on the phone to patients regarding treatment options, dealing with treatment-related side-effects, co-ordinating blood tests and scans if they are unwell, sending people to hospital when needed, speaking to family members regarding social issues, organising referrals for dietician and psycho-oncology appointments, triaging new patient referrals, and much more!

“This role is very important for patients’ quality of life,” Anna says. “It is important to take as much stress away from patients as you can given the traumatic situation they are dealing with themselves. Having someone at the end of the phone to just ask whether something is normal or not is an amazing opportunity. Without it, there would be a lot more of an emotional and physical struggle for patients.”

The Clinical Nurse Consultant role is a service that MIA is proud to offer to our patients to help support them on their melanoma journey.

“My work is very rewarding: I feel a real sense of fulfilment when I am able to help patients and their families through what can be a very difficult period. I am also fortunate to work in an area where medical research is making such a difference to people’s lives.”Anna Hoadley, Clinical Nurse Consultant

37 38

Volunteers are the smiling faces that help us reach the community through awareness and enable us to raise valuable funds to support our melanoma research. Our volunteers are of all ages and walks of life, and they have all, in some way, been touched by melanoma. They are using their time and energy to join us on our mission to find a cure.

We have volunteers who are passionate about raising awareness through community engagement, some who are great organisers and co-ordinate a local Melanoma March, some who share their expertise and time, and some who help us out with very ordinary, but important, jobs around the office.

Our celebrity ambassadors are an important part of our melanoma family too. They take time of our their demanding schedule to help us with some of our key events and promoting our work.

From all of us at MIA, thank you to our wonderful volunteers and ambassadors who make a difference to our organisation and who support us as we work together to find a cure for melanoma.

Our ambassadors volunteer their time and celebrity to help raise awareness of melanoma, and for that, we are truly grateful!

Part of Our Family

MIA ambassadors Lisa Wilkinson, John Eales and Stephanie Rice.

“MIA offers me the opportunity and

the vehicle through which I can hopefully assist other families to avoid the tragedy

of losing a loved one, and avoid the

pain that our family experienced. If one life is saved it is all

worth it.”Chris Bradley, volunteer

39 40

After the sale of his business, Greg Poche AO was looking to give financial support to a worthy cause which, in his words to his friend Reg Richardson AM, "would make a difference". He asked Reg to find such a cause. In the course of this, Reg was introduced to A/Prof Jonathan Stretch AM, a melanoma surgeon and Deputy Director of the Sydney Melanoma Unit, which had been continually short of sufficient funding to undertake the substantial research needed in melanoma. Jon put together a proposal seeking $10 million from Greg Poche for research and medical equipment.

Greg readily agreed to fund this, but decided that he wanted the project to be a bigger one. So after wide consultation, Jon and Reg approached Greg for the funding to build and establish a centre that would be a world-class single tumour cancer facility for research and treatment of melanoma. Greg accepted this proposal, with a final cost to him of $40 million. "The Unit was already world class in terms of skills," said Greg, "but they were living out of corridors in the Royal Prince Alfred Hospital. There wasn't enough space for them to expand and their caseload was huge."

What was lacking was someone with money who believed in them. Greg Poche was that person; with both the money and the belief in the people and the cause. The construction of the remarkable Poche Centre building would provide a comprehensive first-class facility for melanoma research and patient care. When announced in 2005, the benefaction represented the largest ever donation by an Australian to a single cause.

Out of this project, Melanoma Institute Australia was born and, as Greg Poche originally asked for, is making a world of difference.

Greg Poche AO (left) with wife Kay and good friend, MIA Chairman, Reg Richardson AM

Principal Benefactor ($1M +)Greg Poche AO and Kay van Norton Poche

Governors ($100k to $500k)The Cameron Family

Peter and Sally Doherty (CP2)

Nevin and Marie Holland

Perpetual Foundation

Tour de Cure Ltd

Companions ($50k to $100k)Petre Foundation

Skipper Jacobs Charitable Trust

Fellows ($20k to $50k)Nicolette Lewis

Inova Pharmaceuticals

Jo Phillips

Reg and Sally Richardson AM

TAL Services Ltd

Toyota Australia

Kathy White - Geoff White Investments

Friends ($10k to $20k)Michael Alscher

Apex Foundation

Cancer Institute NSW

John Glenn Crane

Global Creatures

Leda Holdings

John Thomas (Dick) Honan

Lancelot Roberts (Bob) Mac Smith

Susan Maple-Brown

Steadfast Foundation

Tony and Gai Wales

Supporters ($5k to $10k)Robert O Albert AO

Ariba International Inc

Steve and Michelle Bennett

Bernard Berson

Davidson High School

Eddy and Gwen DeMarco

Estate of the late Joyce Mary Leary

Donald Hector

Peter Hemming

ICAP

Insurance Australia Limited

Don and Julie Priest

Kennards Hire

Diletta Russell

Dennis Smart

Teachers Federation Health

Vinta Group Pty Ltd

Wilson Security

Melanoma Institute Australia is tremendously grateful to the many individuals and organisations that support our research programs through donations and bequests. Donations, grants and in-kind support of more than $5,000 received in the period of 1 July 2013 to 30 June 2014 are listed below. In addition to those listed are a number of anonymous donations. All support received goes directly to our melanoma research and education programs.

Our Supporters

41 42

James Economides – Manly, NSWPaula Jackson – Bonny Hills, NSWAmanda Lucci & Nathan Jones – Melbourne, VIC

Veronica Manock – Bathurst, NSWLucy Mansell – Brisbane, QLDNicole Miller – Gosford, NSW Clinton Heal – WA

Karen Ryan & Tennille Shelley – Wollongong, NSWViolets and Lace Committee – Townsville, QLD

Rachael Sporn – Adelaide, SAAshleigh McNamara – Newcastle, NSWTony Van de Wakker – Tweed Heads, NSWLeonie Warburton – Darwin, NT

Melanoma March 2014 Committee Leaders

Our Melanoma March Committee Leaders and their teams generously donate large amounts of their time to organise a march in their local community. We are so grateful for their dedication and support in helping us raise awareness and funds for a cure.

Jay Allen and Andrew Rust (900KMFORACURE)Babewatch IncorporatedCyril BaldockEmma Betts Mary BromheadDavid BullockBob Corbett The Challenge Fund

Sara CumnerMarni EnrightKathy GardinerAnna HarperKylie HunterLisa KeenanRaphael McGowan (Cycling to March)

Belinda Selig (Restaurant World Cup)Sunday Drivers Social Golf ClubLindfield Rugby ClubHelen Lloyd Phil HeyhoeJohn Playfair

Helen RubinLinda SeamanBernie SlatteryKathy WhiteKate WoodAdele Veivers

We are so thankful for our passionate community fundraisers! From swimming competitions and cycling across the country to soccer and rugby competitions, golf days, and music concerts, our community fundraisers went to great lengths to raise awareness and funds for a cure. Listed below are our fundraisers who have raised more than $5,000 between 1 July 2013 and 30 June 2014.

Community Fundraisers

Contributors

Michael Birchall michaelbirchall.com

As a stage 4 melanoma survivor, Michael uses his skills as a creative director to help MIA develop communications including this report. He also runs Creative Good, an organisation which uses art to fundraise for charity and inspire people to help others.

Carolyn Seri Photography

After losing a close friend to melanoma, Carolyn is now a passionate supporter and fundraiser for melanoma in Townsville through the charity Violets and Lace. She generously donated her time and talent to take the photographs you see in this report.

True Blue Printing trueblueprinting.com.au

True Blue Printing is a 100% Australian owned family business that has been servicing the North Shore since 1989 and specialise in digital printing. They are proud to support the work of MIA.

Focussed Love Photography focussedlove.com

Focussed Love Photography specialises in capturing the love in human connection and the beauty in nature. They are proud to donate their time to MIA in support of the melanoma community.

“Experiencing Dad’s struggle

with melanoma, especially in his

last 10 months when it spread

to his brain, was incredibly

tough for my family. His passing

is the hardest thing I’ve ever

experienced and the aggressive

nature of melanoma made

life very difficult for all of us.

Fortunately Dad left us with some

amazing memories and a legacy

that fills us with immense pride.

MIA is an incredible organisation

of passionate doctors,

researchers and supporters;

it has been an honour being a

part of the melanoma family and

I look forward to keep marching

into the future for my Dad and all

those touched by melanoma.”

Laura Bergelin, supporter

43

The Poche Centre

40 Rocklands Rd

North Sydney NSW 2060

Australia

melanoma.org.au

Ph. 02 9911 7200