Mito Foundation Symposium

This session will outline the pathway adopted in the UK to introduce mitochondrial donation and the lessons learnt along the way.

Professor Grainne Gorman,
The Wellcome Centre for Mitochondrial Research, Newcastle University, UK

Professor Grainne qualified from the Royal College of Surgeons in Ireland (RCSI) in 1997 and completed three years of general medical training in Dublin, Ireland. She became a medical tutor for third and final medical year students at RCSI for one year, prior to commencing her clinical training in neurology. After completion of specialist training, Professor Grainne moved to Newcastle to further her interest in neuromuscular diseases and was appointed Honorary Consultant Neurologist at Newcastle upon Tyne Hospitals NHS Foundation Trust in 2010. Professor Grainne completed her PhD studies investigating the clinical and genotypic aspects of mitochondrial disease in 2015 and became Senior Clinical Lecturer at Newcastle University the following year.

Professor Grainne was promoted to Professor of Neurology in 2020 and at the same time appointed Director of the Wellcome Centre for Mitochondrial Research at Newcastle University, where she continues to work with colleagues to strengthen their reputation as an internationally renowned centre of excellence in mitochondrial disease and dysfunction. To achieve this, she is committed to attracting, developing and retaining a diverse and inclusive team of outstanding scientists whilst also promoting creativity, encouraging resilience and equipping our next generation of academics to become global leaders at the forefront of medical breakthroughs. Professor Grainne's other leadership roles include the NIHR BRC Lead for Mitochondrial Disease and Lead of the Mitochondria and Neuromuscular Theme within the Newcastle University Translational and Clinical Research Institute, which have all benefitted from my successful recruitment to The Academy of Medical Sciences FLIER leadership programme (acmedsci.ac.uk).

This session will provide an update on Mitochondrial Donation Law Reform (Maeve’s Law) Bill 2021 and related consultation, and the details available in terms of implementation.

Angela Wallbank, Australian Department of Health

Angela Wallbank is the Assistant Secretary of the Strategic Policy Branch at the Commonwealth Department of Health. Angela studied economics and business at the University of Queensland, and received her Executive Master of Public Administration from the Australia and New Zealand School of Government (ANZSOG). Angela has 20 years’ experience developing and implementing government policy reform for the Commonwealth, NSW and Canadian public service. She has worked across a diverse range of policy and program areas including health, workplace relations, water and education.

Dr Genevieve Herbert, Australian Department of Health

Dr Genevieve Herbert is the Director of the Genomics, Safety and Quality Section of the Strategic Policy Branch, at the Commonwealth Department of Health. Originally from the United Kingdom, Genevieve received her PhD in medical sciences 2003 from the John Curtin School of Medical Research at the Australian National University in Canberra, Australia where she studied in the field of molecular genetics. Genevieve has over 17 years’ experience in developing and implementing new government policies across a diverse range of health-related areas including in chronic disease, mental health, workforce, aged care and most recently health genomics. Prior to joining the Australian Public Service, Genevieve worked for a number of years in community services in the areas of homelessness and drug and alcohol support services.

This session will explore the practicality of mitochondrial donation in a clinical setting and also covers other reproductive options outside of mitochondrial donation.

Speakers

Professor Carolyn Sue AM

Professor Carolyn Sue has been trained as a neurologist as well as a research scientist. She has been running Australia’s largest specialised clinic dedicated to the diagnosis, assessment and treatment of adult patients with mitochondrial disease since 1994. In 2003, she set-up Australia’s first exercise laboratory dedicated to the treatment of mitochondrial muscle disease and showed that aerobic exercise training improved muscle performance in Australian patients with mitochondrial disease. It was her vision, combined with the actions of Dr Doug Lingard, which led to the establishment of the Mito Foundation in 2009.

Professor Sue is currently appointed as Professor at the University of Sydney, the Director of the Department of Neurogenetics at Royal North Shore Hospital and the Director of the National Centre for Adult Stem Cell Research (Sydney Node). She completed her post-doctoral studies at Columbia University in New York, and returned to Australia in 2000 to establish her own research team, currently located at the Kolling Institute of Medical Research, at Royal North Shore Hospital. She has a major interest in understanding the disease processes involved in mitochondrial disorders, with an emphasis on developing new treatment options for affected patients. She is also using stem cells as a cellular model to investigate mitochondrial disease.

Carolyn is a founding director of the Mito Foundation.

Dr. Suzanne Sallevelt 

Dr Suzanne Sallevelt is a clinical geneticist originally from the Netherlands; she studied Medicine and undertook her training in clinical genetics in Maastricht, The Netherlands and was subsequently appointed as a consultant in the Clinical Genetics Department, Maastricht University Medical Center+ (MUMC+) in 2013, where she worked until April 2020. More recently, she held a locum clinical geneticist role at Royal North Shore Hospital in Sydney. She is currently employed as a senior consultant in the Paediatric and Reproductive Genetics Unit of the Women’s and Children’s Hospital, Adelaide, where she started in December 2020. Besides being trained all-round in adult and paediatric clinical genetics, her specific areas of expertise are reproductive genetics, including prenatal diagnosis (PND) and preimplantation genetic testing (PGT), and mitochondrial genetics in the context of these reproductive options. She completed her PhD through Maastricht University in 2017 with her thesis entitled “Preventing the transmission of mitochondrial diseases”. Another of her research interests is preconception carrier screening/testing; she has had a major role in developing an exome-based diagnostic preconception carrier test for consanguineous couples that included >2000 genes (Sallevelt et al. Genet Med 2021).

This session will touch on the lives of people who are impacted by mitochondrial disease their reasons for wanting the opportunity to access mitochondrial donation.

Speakers

Rebecca Patterson

Bec was diagnosed with mitochondrial disease (mito) in 2016, after suffering ongoing symptoms for a number of years. She lives on the Sunshine Coast in Queensland and takes every opportunity she can to raise awareness for mito. This includes her blog “Girl with the Green Bow” which launched in 2017, to track her journey living with mito.

Bec has collaborated with Alice Gibson, owner of Mito Merch and launched her own “Bow collection” range of clothing.

Bec understands how isolating living with mito can be.

This session will touch on the challenges in the Australian context and how they might be overcome.

Speakers

Professor Megan Munsie

Professor Munsie is an internationally recognised leader in the stem cell research community. She has led engagement and policy activities for a series of major Australian Government funded programs in stem cell science and is currently the convenor of Stem Cells Australia, an online education initiative that aims to provide clear and reliable information to Australians curious about stem cells and their role in medicine. She holds a joint appointment across the University of Melbourne’s School of Biomedical Sciences and the Melbourne Medical School and heads a highly regarded interdisciplinary research program examining the ethical, legal and social implications of stem cell research. Her research is global in scope and underpinned by an extensive collaborative network of leaders from community, industry and academia. She draws on findings from her research to develop innovative strategies to address public expectations and influence policy reforms to foster responsible research and clinical translation practices.

Megan received her undergraduate degree in applied science (QUT, 1987) before completing a Masters in Reproductive Sciences (Monash, 1996) and Doctorate in Philosophy in stem cell biology and therapeutic cloning (Monash, 2001). She has extensive experience in biotechnology and has also worked for over ten years as a clinical embryologist in Australian IVF clinics.

This session will allow participants to ask questions to the speakers.