Speaker biographies
In Order of Agenda
Julian Morrow - Master of Ceremonies
Co-founder of The Chaser and Giant Dwarf, Creator of The Checkout
Julian Morrow is the co-founder of satirical media empire The Chaser and joke company Giant Dwarf. He has made numerous TV shows including The Election Chaser, CNNNN, The Chaser's War on Everything, The Hamster Wheel and The Checkout. His work has been nominated for many awards. In recent years, he's been the Executive Producer of two Lawrence Leung's series, Choose Your Own Adventure and Unbelievable, as well as Eliza and Hannah Reilly's Growing Up Gracefully and Sarah Scheller and Alison Bell's The Letdown (which won the 2018 AACTA Award for Best TV Comedy).
In 2012 and 2013, he hosted Friday Drive on ABC Radio National. In 2015, Julian founded Giant Dwarf theatre at 199 Cleveland Street Redfern.
Over the years, Julian has interviewed countless people including Edward Snowden, Christopher Hitchens, Sting, Nobel Peace Prize winner Leymah Gbowee, Marc Newsome and the curator of TED, Chris Anderson.
Australian Government's Commitment to Rare Diseases
Hon Greg Hunt MP
Minister for Health and Aged Care
The Hon Greg Hunt MP has been Minister for Health since January 2017 and has been working to deliver a world class health system for Australia. In December 2020, Minister Hunt added responsibility for Aged Care to his portfolio, leading the Government’s response to the Aged Care Royal Commission.
In January 2017, Minister Hunt was appointed Minister for Health and Sport. He has always had a strong connection with the medical profession. His mother was a nurse and his wife is a nurse.
Minister Hunt will use his background in the Industry, Innovation and Science portfolio to build on Australia’s track record for medical breakthroughs, turning what is done in the laboratory into better healthcare for patients.
Mental health is an issue that is particularly important to Minister Hunt. He wants to be a strong advocate for greater understanding and community awareness, and to ensure we have the necessary resources to help deal with this very important issue.
Joanna Betteridge
Chair, Rare Voices Australia
Joanna Betteridge, Principal of Betteridge Legal Consulting, is an employment and workplace safety lawyer and consultant and an accredited mediator. Joanna is also a Senior Fellow at Monash University and lectures in its Laws Faculty post graduate program including lecturing in anti-discrimination law. Joanna is the immediate past Chair of the TEAR Australia Board (a global aid and development organisation) and has held a number of Board roles in a variety of not-for-profit and Government Boards since 2003. Joanna sat for many years on the committee of the Australian MPS Society, becoming involved soon after her two nephews, Jack and Tom, were diagnosed with MPS III, Sanfilippo Syndrome, in 1998.
Australian Labor Party's Commitment to Rare Diseases
Hon Mark Butler MP
Shadow Minister for Health and Ageing
The Hon Mark Butler has been a Labor Member in the Federal Parliament since 2007 and is the Shadow Minister for Health and Ageing. He served as the Member for Port Adelaide from 2007 – 2019 and after a Federal redistribution, which saw the abolition of the seat of Port Adelaide, he was elected the Member for Hindmarsh.
Mr Butler served as Minister for Ageing and Australia’s first Minister for Mental Health in the Gillard Government. He has also held the ministries of Housing, Homelessness, Social Inclusion, Climate Change, Water and the Environment. In 2021, Mr Butler was appointed Shadow Minister for Health and Ageing.
Nicole Millis
Chief Executive Officer, Rare Voices Australia
A qualified social worker, Nicole has both personal and professional experience in the rare disease sector. Nicole has over 12 years’ worth of experience in rare disease advocacy, particularly regarding access to treatments. Since 2018, Nicole has held the role of consumer nominee on the Life Saving Drugs Program Expert Panel. Under Nicole’s guidance, RVA led the collaborative development of the National Strategic Action Plan for Rare Diseases, the first nationally coordinated effort to address rare diseases in Australia.
Neroli's Legacy
Jock Cheetham
Jock Cheetham has been a journalist since 1991. His writing has been published in The Sydney Morning Herald, The Australian, Good Weekend, Guardian Australia and many others, including the ABC.
Jock spent 13 years at Fairfax Media, with six years at the Herald and seven years as manager of editorial training in Sydney. In 2017, he and his partner, Neroli Colvin, moved to Bathurst where Jock is now a senior lecturer, teaching journalism. He has a master’s degree in journalism as well as a research master’s degree on Indonesian politics, and is undertaking a memoir and storytelling project as part of his PhD at the University of Sydney.
In 2009, he was a Walkley Award finalist for a feature series about a murder in inner Sydney. This was one of numerous in-depth and investigative features published at the Herald and The Sun-Herald during his time there. Since 2005, he has worked as a volunteer on development in East Timor, helping fundraise and distribute $150,000 to support independent journalism and media.
In 2018, Jock lost Neroli, aged 53, after an 18-month battle with health issues related to her rare disease, osteopetrosis, which she had lived with since birth.
Image Credit: Michael Chetham
Panel Discussion: What Person-centered Means to People Living with a Rare Disease
Viswanathan Narayanaswamy (Vishy)
Director, Rare Voices Australia
Vishy is a Chartered Accountant by profession and has over 18 years’ worth of experience in accounting, auditing and taxation. Vishy is a member with the Institute of Chartered Accountants of Australia and New Zealand and the Institute of Chartered Accountants of India. He is currently working as a senior manager in a public accounting firm in Sydney. Vishy supports the Board with finance and accounting related matters. Vishy was diagnosed with paroxysmal nocturnal hemoglobinuria (PNH) disease, a rare blood disorder, in 2008 and has been receiving treatment since then.
Andrew Bannister
Andrew was born with three rare brain malformations – Periventricular Nodular Heterotopia (PVNH), Polymicrogyria and Cerebella Hypoplasia – as well as two other congenital malformations. His cerebellum is a quarter of the average size. These rare malformations have not stopped him achieving many things even though he has an intellectual and physical disability.
Andrew’s determination to overcome the obstacles in his life inspires people yet it is he who wants to help others by raising awareness about rare diseases. Andrew was inspired to illuminate landmarks to create awareness for rare diseases when through an international support group, he learned about Ella, a girl who died at eight months due to Periventricular Nodular Heterotopia (PVNH, one of Andrew’s rare diseases). Ella’s mum organised to illuminate the Perth Bell Tower to mark World PVNH Day in 2018 and Andrew decided to organise more illuminations in 2019 for the day. Andrew’s efforts soon extended to Rare Disease Day and in 2020, Andrew arranged for 35 landmarks in Australia and around the world to be illuminated. Andrew continued his efforts in 2021, organising almost 70 landmarks to be illuminated across the globe in Australia, Asia, USA, Canada and Europe.
Christine Lowe
Christine has lived with the rare neuromuscular disease of Myositis for approximately 17 years. After taking six years to achieve a diagnosis, she intimately understands the need for increased awareness and education for rare diseases. Following her diagnosis, Christine has provided support to patients and carers through voluntary leadership roles with the Myositis Association-Australia Inc (MAA). She also worked as a lawyer for many years but the balance of work and life with Myositis became too challenging. Since retiring, she has become President of MAA and along with their Committee, has been actively engaged in encouraging Myositis research. MAA is an RVA Partner organisation, has affiliations with international Myositis support groups and works closely with medical experts locally and overseas
Tim Fulton
I was formally diagnosed with Adult-onset Still’s disease (Still’s disease) in 2016 at the age of 22. Still’s disease is a rare systemic, auto-inflammatory condition that affects between one in 100,000 to one in 1,000,000 people globally. In August 2020, to stay on top of my mental health, combat the effects of calcium leaching from my medication and driven by my desire to encourage people, in particular the rare disease community, I set myself the goal of running 100km before Rare Disease Day — a big audacious goal given my health! I began the Instagram page Running Rare to document my progress and this has evolved this year to the development of an accompanying website to encourage and uplift the rare disease community. I am a big believer of living with a ‘it is possible’ attitude. This doesn’t mean you’re naive to the reality of your circumstances, but it does encourage and motivate you to think about what might make something possible — and that is such an important first step.
Monica Hunter
Monica was diagnosed with Fabry disease at age 10. Fabry is a lysosomal storage disorder and is prevalent in her family, which led to Monica receiving a speedy diagnosis when symptoms started appearing following a virus. At age 12 she began experiencing excruciating neuropathic pain in her extremities that made walking and using her hands very difficult. This led to many hospitalisations to try and manage the pain. After exhausting all pain medications, Monica was approved for Enzyme Replacement Therapy (ERT), making her the first paediatric female to start on ERT in Australia. Monica has been on ERT for nine years now, and after transitioning into the adult service, made the decision to have her treatments at home.
Monica is now in her second year of nursing (her dream job) and volunteered for Livewire at the Royal Children's Hospital in Melbourne, before COVID-19 paused the program. She has worked in a pharmacy for seven years and this has helped with her knowledge of medications for her course.
Panel Discussion: Emerging Therapies and Their Potential to Revolutionise Care for People Living with a Rare Disease
Dr Mike Freelander MP
Co-Chair, Parliamentary Friends of Australians Living with Rare Diseases
Deputy Chair, Standing Committee on Health, Aged Care and Sport
Dr Mike Freelander is the Member for Macarthur and a local paediatrician who has dedicated his life's work to making sure kids get the best start possible.
Dr Freelander completed his training at the Children’s Hospital in Camperdown and started his residency as a paediatrician at Campbelltown Hospital in 1984. He and his wife Sharon moved to the Macarthur region that same year, where they raised their six children. In 1990, Dr Freelander took on the role of Head of Paediatrics at Campbelltown Hospital.
Dr Freelander has seen how important it is that families in Macarthur have quality health care. In his 36 years as a paediatrician in the Macarthur region, he has seen over 200,000 patients.
Trent Zimmerman
Co-Chair, Parliamentary Friends of Australians Living with Rare Diseases
Chair, Standing Committee on Health, Aged Care and Sport
Trent Zimmerman is the Member for North Sydney in the Australian Parliament. He was first elected to Parliament in a by-election on 5 December 2015 and re-elected at the 2016 and 2019 general elections.
Mr Zimmerman is the Chair of the House of Representatives Standing Committee on Health, Aged Care and Sport. He is also the member of the Standing Committee on the Environment and Energy, the Standing Committee on Communications and the Arts and the House Privileges Committee. Mr Zimmerman is Convenor of the Coalition Friends of Tourism, Co-Convenor of several bi-partisan Parliamentary Friendship Groups including SBS, Rare Diseases and the Australian Catholic University. He is also Chair of the Parliamentary Friends of Armenia and Argentina.
Megan Donnell
Megan is the Chief Executive Officer and Founder of Childhood Dementia Initiative, a pioneering world first Initiative that is addressing the appalling lack of awareness of childhood dementia, and accelerating therapeutic development and better access to appropriate health and social care across the globe. Launched in November 2020, the Initiative is a finalist as an Emerging Not For Profit for the 2021 Third Sector Awards Australia, and Megan has been recognised as one of ProBono Australia’s Impact 25 winners 2021 for her trailblazing in this field.
Prior to this, Megan founded Sanfilippo Children's Foundation following the diagnosis of both her children with Sanfilippo syndrome, a rare form of childhood dementia. Under her leadership, the Foundation raised over $9 million over 7 years, transforming research into this little-known condition internationally. Megan's ground-breaking work earned her Research Australia's 2017 Advocate of the Year Award.
Megan’s strategic acumen and ability to build collaborations and drive momentous change were honed during her 15 years’ international experience as a Change Manager, Management Consultant and Project Manager in leading companies, including Deloitte, and she holds an MBA.
Renae Beardmore
Renae is an experienced advisor to the health sector. She has worked for 30 years in health, covering the spectrum of healthcare from policy development, regulation and reimbursement through to clinical delivery. Renae’s work is focused on ensuring that the system supports equitable patient access to care. As the Pricing Advisor to the Pharmaceutical Benefits Pricing Authority (PBAC), Renae was responsible for the primary carriage of price negotiations for the Pharmaceutical Benefits Scheme (PBS). She has also held the role of Chief Pharmacist for the Australian Capital Territory (ACT) and was a member of the Australian Committee for Medicines Scheduling (ACMS) of the Therapeutic Goods Administration (TGA). Renae is the current National Vice-President of the Pharmaceutical Society of Australia and has been appointed by the Federal Minister for Health to Chair the Pharmaceutical Services Federal Committee of Inquiry.
Elizabeth de Somer
Elizabeth de Somer has a lifetime of experience in health care and pharmaceutical health policy with a core focus on improving the lives of patients.
Liz began her career in nursing and spent over 10 years as an Intensive Care nurse in the front line of critical care in London and Australia. A chance role supporting a clinical research trial ignited a passion for drug development, leading Liz to a Master of Medical Science (UNSW) in 2007.
Liz has worked across drug development, clinical research, regulatory affairs and market access in the pharmaceutical industry. Liz now leads Medicines Australia, the peak body for the research based pharmaceutical industry, comprising the predominant multinational companies developing new treatments. Medicines Australia is focussed on ensuring timely patient access to new medicines, vaccines and emerging technologies through sound public health policy.
Liz also contributes her clinical and industry expertise to several expert committees and advisory panels for the Government and university sector. This includes a position on the sub-committees to the Pharmaceutical Benefits Advisory Committee (PBAC) [the Economic Sub-Committee ESC and Drug Utilisation Sub-Committees DUSC].
Liz provides occasional lectures on drug development, regulation of medicines, quality use of medicines and the policy environment affecting access to medicines in Australia.
Panel Discussion: Ensuring Research into Rare Diseases is Collaborative and Person-centred
Professor Susannah Ahern
MBBS (Hons), MBA, FRACMA, PhD
Professor Ahern is a medical administrator and academic in health services research and management at Monash University. As the Head, Clinical Outcomes Data Reporting and Research Program at Monash University, she is the Monash Academic Lead for six national clinical quality registries including in dementia, cystic fibrosis, breast devices, spine surgery and pelvic floor procedures. Her areas of research interest include registry governance, secondary use of clinical registry data, registry data reporting and benchmarking, and clinical and consumer engagement with registries. Professor Ahern also coordinates and teaches the Master of Health Management and Health Administration courses at Monash University. She has published 50 papers in peer-reviewed journals and co-authored many annual registry reports. She is currently a member of the Clinical Principal Committee (CPC) Clinical Quality Registries (CQR) Expert Advisory Group (EAG) and the Breast Implant Expert Working Group of the Australian Government Department of Health; the Clinical Quality Registries Framework Review Advisory Group, of the Australian Commission of Safety and Quality in Healthcare; and the CQR Working Group, Victorian Agency for Health Innovation, of the Victorian Department of Health and Human Services.
Professor John Christodoulou AM
MB, BS, PhD, FRACP, FFSc(RCPA), FRCPA, FHGSA, FAHMS
John graduated from the University of Sydney, and has formal qualifications in paediatrics, medical genetics and genetic pathology. He has been based at the Murdoch Children’s Research Institute (MCRI) in Melbourne since 2016. He is currently the Director of the Genetics Research Theme of the MCRI, and co-leads the Brain and Mitochondrial Research Group with Professor David Thorburn. He holds the Chair of Genomic Medicine, Department of Paediatrics, University of Melbourne.
Apart from mitochondrial disorders, his other major research interests are in Rett syndrome and related neurodevelopmental disorders. He has a major research interest in the application of next generation sequencing (NGS) technologies in rare genetic disorders and is a chief investigator of the Australian Genomics initiative.
He has published over 300 peer reviewed papers and is regularly called upon for lectures on a range of genetics subjects.
John is a former Past President of the Human Genetics Society of Australasia (2005 – 2007). In 2010, he became a Member of the General Division of the Order of Australia (AM) and in 2017 became a Fellow of the Australian Academy of Health & Medical Sciences.
Clinician/Professor Gareth Baynam
MBBS, DCH, FRACP, PhD, AFAIDH
Professor Gareth Baynam is a Head of the Western Australian Register of Developmental Anomalies (birth defects and cerebral palsy registers); Clinical Geneticist and Program Director of the Undiagnosed Diseases Program WA; Board Member of the Undiagnosed Diseases Network International; and Adjunct Genomics Policy Officer in the Western Australian Health Department. He is affiliated with the University of Western Australia; Curtin University; Murdoch University; Notre Dame University; Melbourne University; and Telethon Kids Institute. He is the Founder of an integrated suite of cross-sector and community engaging initiatives to improve the lives of people living with rare diseases including Project Y, Cliniface and Lyfe Languages. He Chairs and/or is one of the Executive or Advisories of multiple international rare diseases initiatives and has personal connections to rare diseases.
Jack Nunn
Jack is the Founder and Director of the education charity Science for All, working to involve people in doing research by building partnerships between the public and researchers (ScienceforAll.world). This work includes creating standardised ways of reporting data about initiatives, including standardised data about how people affected by rare diseases have been involved in research (STARDIT).
Jack’s research area is in creating and evaluating equitable and ethical ways for people to get involved in all aspects of research and science, including public health and environmental research. Jack is a PhD researcher in the department of Public Health at La Trobe University, where he is currently exploring genomic research and how people can be involved in shaping the future of this research.
Jack has recently worked on projects with people around the world, working to involve them in co-designing research using online tools. He has also worked with Cochrane Australia, the World Health Organisation, the Australian Department of Health, the Poche Centre for Indigenous Health and the UK's National Institute of Health Research. Jack is a member of the Australian Federal Department of Health's Medical Services Advisory Committee Evaluation Sub-committee, the Cochrane Council and is the Strategy Liaison for the Wikimedia Foundation WikiJournals.
Jarrod Belcher
Jarrod Belcher is the Director of the Researcher Exchange and Development within Industry (REDI) initiative, based in Melbourne. MTPConnect is the industry growth centre for the Medtech, Biotech, Digital Health and Pharma (MTP) sectors and deploys the MRFF REDI Initiative. REDI is focused on facilitating the development of the workforce for the MTP sector, through identifying skills gaps across the sector and supporting the closing of these through education, training and internship/fellowship opportunities. REDI currently supports more than 25 programs nationally and is growing.
Jarrod led the delivery of the first vocational Bachelor of Biotechnology program delivered in TAFE and the delivery of biotechnology qualifications into China. Jarrod has a background in the biosciences with a BSc in Biochemistry and Molecular Biology from the University of Melbourne, and postgraduate qualifications in training and education and competitive manufacturing.
Panel Discussion: Developing a National Rare Disease Workforce That Responds to Current and Future Demands
Prof Adam Jaffé
BSc (Hons), MBBS, MD, FRCP, FRACP, FThorSoc
Chair, Rare Voices Australia Scientific & Medical Advisory Committee
Professor Adam Jaffe is the John Beveridge Professor of Paediatrics and Head of the School of Women’s and Children’s Health, UNSW Medicine, and a Paediatric Respiratory Consultant at Sydney Children’s Hospital, Randwick. Professor Jaffé was appointed as Consultant in Paediatric Research at Great Ormond Street Hospital for Children and headed up Respiratory Medicine research at the Institute of Child Health London in 2001. Adam chairs the Young Lungs program of Lung Foundation Australia and is on Lung Foundation Australia’s Rare Lung Diseases Committee. He is the Chair of the Research Advisory Committee of Asthma Australia. He was on the Lung Foundation Australia committee writing the National Strategic Plan for Lung Conditions (2019). His interests lie in the areas of asthma, cystic fibrosis, childhood respiratory infections and rare “orphan” lung diseases.
Dr Emma Palmer
Dr (Elizabeth) Emma Palmer is a clinical geneticist at Sydney Children’s Hospitals Network (SCHN) and university lecturer at the University of New South Wales in Sydney, Australia. She is passionate about improving the patient journey for all with rare genetic conditions and their families. This includes by improving the recognition of the possibility of genetic conditions, maximizing the diagnostic yield of genetic tests and optimizing patient and clinician education, rare disease treatments and supports. She has over 45 peer reviewed journal articles, including those describing nine new genetic conditions. She is working with the Rare Voices Australia team on the Department of Health funded Rare Awareness Education, Support and Training (RArEST) project, in particular leading the clinician education stream. Her clinical research group, CoGENES, works with families of children with rare genetic epilepsy to improve diagnosis, management and support. She also leads a program GeneEQUAL to improve equity in access to genomic education and counselling, and GeneSTART to understand how to systematically link rare disease families to research opportunities and high quality management guidelines.
Dr Angela Jackson
Dr Jackson is lead economist at Equity Economics, with expertise in distributional analysis, labour markets, disability, health, gender, housing and fiscal policy.
Starting her career at the Department of the Prime Minister and Cabinet under the Hon John Howard’s Prime Ministership, Dr Jackson went on to become Deputy Chief of Staff to the Australian Minister for Finance and Deregulation, the Hon Lindsay Tanner MP during the Global Financial Crisis.
She is currently National Deputy Chair of the Women in Economics Network, Board Member at Gender Equity Victoria, a regular contributor to the NFAW Gender Lens on the Budget and a member of the National Heart Foundation’s Victorian Advisory Board. She previously served as a Non-Executive Director at Royal Melbourne Hospital for six years.
Dr Jackson holds a Masters in International Health Policy (Health Economics) with Distinction from the London School of Economics and Political Science and completed her PhD on the Economics of Disability in Australia at Monash University’s Centre for Health Economics.
Dr Jackson provides regular economic commentary on television and radio, and has had articles published in The Age, the Conversation, The Australian, The New Daily and Croakey. She recently co-published an article in the Australian Journal of Labour Economics on the gendered labour market impacts of the COVID-19 pandemic in Australia.
Nicholette Conway
Nicholette is passionate about delivering timely and equitable access to new and innovative medicine for all Australians by enabling patients to make informed decisions about their care and fostering cross functional collaboration to support the integration of new medicines and innovations into the healthcare system. Demonstrating value in this evolving space is challenging and, central to delivering better patient outcomes, is an innate understanding of the clinical and economic value delivered by precision medicine for all stakeholders.
Nicholette leads the Industry Genomics Network Alliance (InGeNA) Workforce and Capabilities stream and currently works within industry for Eli Lilly, is a member of the Oncology Industry Taskforce (OIT) and leads ARCS Precision Medicine Community of Practice. External to her industry role, she is Deputy Chair of Genetic Alliance Australia, a patient advocacy and support group. Nicholette has multidisciplinary experience which covers Clinical Research, Market Access (HTA), Marketing, Commercialisation, and Patient Advocacy across the Pharmaceutical, Biotechnology, Diagnostics and Medical Device industries in a range of therapeutic areas.
Meagan Cross
Meagan Cross is a founding member of the Foundation for Angelman Syndrome Therapeutics in Australia (FAST Australia), established in 2010, and a current board member for the charity of the same name in the United States. Meagan is the Chairperson for FAST Australia and the project lead for the Global Angelman Syndrome Patient Registry. Meagan is passionate about raising awareness and improving the quality of life for individuals with Angelman syndrome and other rare diseases. Meagan seeks to highlight the value of patient organisations as a significant stakeholder in raising awareness and improving the quality of life for individuals with rare diseases.
Meagan is also a small business owner and has a background in information science; she also runs a small charity in her hometown of Cairns that hosts an annual fun run and walk to raise awareness for Rare Disease Day. Meagan has two daughters; her youngest daughter Molly has Angelman syndrome.
Closing
Kane Blackman
Deputy Chair, Rare Voices Australia
Kane is a senior executive with the Western Australian (WA) Government at the Insurance Commission, which provides injury and liability insurances and related investment functions. Prior to the public sector, Kane worked in various Australian and international resource companies and in private equity. Kane is a non-executive director of Therapy Focus, the largest provider of therapy services to people with disability in WA. He is an advisory council member of the WA Future Health Research and Innovation Fund, a member of the WA Minister for Health’s Precision Health Council and a member of the WA Minister for Disability’s Advisory Council. Kane is also a State Committee member of the Governance Institute, a lecturer in corporate governance, a chartered company secretary and MBA graduate. Kane has a son with Angelman Syndrome and is the Deputy President of the Angelman Syndrome Association Australia. Kane is also the Chair of RVA’s Nomination Committee.