2018 Australasian Neurofibromatosis Conference

SAVE THE DATE

FRIDAY 21ST SEPTEMBER, 2018

We are proud to announce the 2nd Australasian Neurofibromatosis Conference to be held in Melbourne on Friday 21st September, 2018.

The conference will feature a keynote address from Doctor Bruce Korf MD, PhD, who is one of the leading clinical experts and researchers in the field of neurofibromatosis. The address will be followed by presentations outlining the latest clinical thinking on research findings and treatment approaches for patients diagnosed with Neurofibromatosis (NF).

Our aim is to bring together clinicians and researchers to improve collaboration in this diverse clinical community.

DATE: Friday 21st September 2018
LOCATION: Cox/Walford seminar room - Level 5, MCRI
The Royal Children’s Hospital 
50 Flemington Road, Parkville VIC 3052

PLEASE NOTE: This event is exclusively for Doctors, Clinical Specialists, Scientists and Researchers in the field of Neurofibromatosis.

Online Registrations are now closed however if you would like to come, please contact CTF on 02 9713 6111

Full Program

 

Please note: Program is subject to change. 

Keynote Speaker 

Bruce R. Korf, M.D., PhD

Dr. Korf is the Chief Genomics Officer, UAB Medicine, Wayne H. and Sara Crews Finley Endowed Chair in Medical Genetics, Professor of Genetics, Co-Director of the UAB-HudsonAlpha Center for Genomic Medicine, Associate Director for Rare Diseases, Hugh Kaul Personalized Medicine Institute and editor-in-chief of the American Journal of Human Genetics.

He is a medical geneticist, pediatrician, and child neurologist, certified by the American Board of Medical Genetics and Genomics (clinical genetics, clinical cytogenetics, and clinical molecular genetics), American Board of Pediatrics, and American Board of Psychiatry and Neurology (child neurology).

Dr. Korf is past president of the Association of Professors of Human and Medical Genetics, past president of the American College of Medical Genetics and Genomics, and current president of the ACMG Foundation for Genetic and Genomic Medicine. He has served on the Board of Scientific Counselors of the National Cancer Institute and the National Human Genome Research Institute at the NIH.

His major research interests are molecular diagnosis of genetic disorders and the natural history, genetics, and treatment of neurofibromatosis. He serves as principal investigator of the Department of Defense funded Neurofibromatosis Clinical Trials Consortium, the Alabama Genomic Health Initiative, and the Southern All of Us Network.

He is co-author of Human Genetics and Genomics (medical student textbook, now in fourth edition), Medical Genetics at a Glance (medical student textbook (now in third edition), Emery and Rimoin’s Principles and Practice of Medical Genetics (now in 6th edition), and Current Protocols in Human Genetics.

 

Speaker Bios 

Professor Kathryn North AM

Professor Kathryn North AM trained as a paediatric physician, neurologist and clinical geneticist.

She received a doctorate for research into Neurogenetics and completed her postdoctoral fellowship in the Harvard Genetics Program. She is Director of the Murdoch Childrens Research Institute and David Danks Professor of Child Health Research at the University of Melbourne. Professor North is a translational scientist and is widely recognised as a world leader in four major areas of research – genomic medicine, cognitive deficits in neurofibromatosis, neuromuscular disorders, and the study of genes that influence athletic performance. She leads a large multi-disciplinary basic and clinical research team that has made major innovations in the areas of gene discovery, improved diagnosis and prevention, understanding of disease mechanism and the development and evaluation of novel therapies through clinical trials. In 2014, Professor North was appointed as Co-Chair of the Global Alliance for Genomics and Health – a collaborative network of over 470 organisations across over 45 countries funded by the NIH and the Wellcome Trust – and she leads an NHMRC-funded national network of over 70 institutions - the Australian Genomics Health Alliance, to provide evidence and practical strategies for the implementation of genomic medicine in the health system. Professor North has received a number of awards for her research including the GSK Australia Award for Research Excellence (2011), the Ramaciotti Medal  for Excellence in Biomedical Research (2012) and the Member of the Order of Australia (AM) for service to medicine in the field of neuromuscular and neurogenetics research (2012). In 2014 she was appointed as a Foundation fellow of the Australian Academy of Health and Medical Science.

A/Prof Aaron Schindeler ​

A/Prof Aaron Schindeler is the head of the Bioengineering and Molecular Medicine laboratory at the Children’s Hospital at Westmead.

He holds academic appointments at the University of Sydney (conjoint A/Prof, Sydney Medical School; A/Prof School of Chemical and Biomolecular Engineering). He leads a multidisciplinary team of scientists, engineers, and medical and allied health professionals. His research areas include studying the musculoskeletal complications associated with Neurofibromatosis type 1, pharmaceutical modulation of fracture healing, reducing the risk and impact of fracture and implant infection, drug and gene-based therapies for brittle bone disease, and bone tissue engineering using novel biomaterials and 3D printing.

Dr Mimi Bernam 

Dr Mimi Berman runs the NF clinic at Royal North Shore Hospital where she manages the care of adults and children with NF1, NF2, and Schwannomatosis.

Dr Berman trained at the Children’s Hospital at Westmead, where she worked in the Paediatric NF clinic. She has a PhD in Neurogenetics in the area of mucle performance and metabolism. Dr Berman is the Co-Chair of the Clinical Genetics Network of the Agency for Clinical Innovation, and a member of the NSW Health Genomics Strategy Executive Committee.  Dr Berman is the Medical Advisor to the Australian Children’s Tumour Foundation.

A/Prof Gary Rance

A/Prof Gary Rance is an audiologist, clinical researcher and Professor at the University of Melbourne where he is Director of Academic Programs for the Department of Audiology and Speech Pathology and Director of the Centre for Auditory Neuroscience.

His research areas have included auditory evoked potentials, cochlear implants in children, and the perceptual effects of both permanent and transient hearing loss.  He has also been a leader in the field of auditory neuropathy (AN) and was responsible for the first publications to describe this form of hearing abnormality in newborn babies.

Dr Maree Flaherty

Dr Flaherty is a Senior Consultant Ophthalmologist at the Children’s Hospital Westmead. Dr Flaherty opened the Children’s Eye Centre in 1993. She graduated in Medicine from UNSW with Honours in 1978, and became a Fellow of the Royal Australian College of Ophthalmologists in 1984 following training at Sydney Eye Hospital. She gained further qualifications in Human Genetics Theory at Macquarie University in 1991, and was granted a Fellowship of the British College of Ophthalmology the same year. In 1992 Dr Flaherty was awarded the RACO/OPSM Travelling Fellowship to further her studies in paediatric ophthalmology and genetic eye disease.

She is a member of the American Academy of Ophthalmology, the American Association of Paediatric Ophthalmology and Strabismus, the International Strabismological Association as well as various genetic associations.  She has authored a number of publications in Australian and international peer reviewed journals. She has admitting rights at Westmead Private and Westmead Children’s Hospital. Dr Flaherty runs a monthly combined a Genetic/Ophthalmology clinic with Assoc Prof Robyn Jamieson. Dr Flaherty also has a particular interest in Neurofibromatosis and is part of a combined multi-disciplinary group including Neurology and Oncology, monitoring NF children with optic nerve tumours.

Dr Julie Howle

Dr Julie Howle is a surgical oncologist based at Westmead Hospital since 2008 where she is the head of both Melanoma and Sarcoma Multidisicplinary Groups and is a Clinical Senior Lecturer at The University of Sydney. She studied medicine at the The University of Sydney graduating with a First Class Honours and compelted her training in general surgery in 2005 in NSW and spent two subsequent years in subspecialty training in surgical oncology.

Dr Howle has been the supervisor of general surgical training at Westmead Hospital since 2009 and will be the Chair of the NSW Regional Board of General Surgical training from May 2014. She has been affiliated with Melanoma Institue Australia since 2008 and is involved in clinical trials in Melanoma and Merkel cell carcinoma, the subject of her Master of Surgery. Her clinical interests include the management of melanoma and advanced non-melanoma skin cancers, soft tissue tumours and thyroid disease.  

Dr Mark Wong

Dr Mark Wong is a medical oncologist at Westmead Hospital and a clinical senior lecturer at the University of Sydney.

He graduated from the University of NSW and obtained his PhD in pharmacogenetic research in 2008. His research is focused on therapeutic drug monitoring and pharmacogenetics of targeted therapies. He is also specialising in the management of patients with soft tissue sarcomas, nervous system tumours and gastro-intestinal tumours.

Dr Geoff McCowage

Dr Geoff McCowage is a Paediatric Oncologist and Senior Staff Specialist at The Children's Hospital at Westmead since 1996.

He has a particular clinical interest in neuro-oncology and sarcomas of bone and soft tissue. Dr McCowage is SCHN Westmead’s Principal Investigator for clinical trials of the international Children's Oncology Group, and is also involved in other clinical trials sponsored by industry and other consortia. His current research involves gene transfer with haematopoietic stem cells, focusing on the development of clinical gene therapy trials.

Ms Evelyn Culnane

Ms Culnane leads Transition to Adult Care at the Royal Children’s Hospital (RCH) Melbourne; a service which since 2010 has provided tailored transition support, preparation and care coordination from paediatric to adult and community services for over 1300 patients and their families annually, across all clinical and surgical units at the RCH and with equivalent external partners including adult hospitals and General Practice. 

Evelyn’s work has also resulted in the development of over 40 joint paediatric and adult service transition pathways in Victoria, including an NF1 transition pathway to the Royal Melbourne Hospital (RMH) and capacity building in General Practice.  Evelyn provides consultation to health services across Australasia and internationally and leads a number of other significant innovations in transition care including:

- The RCH and RMH Transition initiative which has brought together more than 25 clinical/surgical departments, General Practice, consumers, clinical networks and other key stakeholders.  A key component of this project will be the delivery of a major international, 3-year study evaluating transition outcomes for patients and their families moving from the RCH to the RMH, including NF1, and the comparison of outcomes with partner hospitals in Finland

- A new model of (transition) care for young people with Intellectual Disability and/or Autism Spectrum Disorder with mental health or behavioural concerns

Dr Gabriel Dabscheck

Dr Gabriel Dabscheck is a specialist Paediatric Neurologist and Epileptologist neurologist at The Royal Children's Hospital in Melbourne.

He has special interests in epilepsy and neurofibromatosis. Dr Dabscheck graduated from Melbourne University with Bachelor of Medicine/Bachelor of Surgery (MBBS, Hons). Dr Dabscheck trained in paediatrics at The Royal Children's Hospital in Melbourne. He completed his paediatric neurology training at Sydney Children's Hospital and trained in adult neurology at St Vincent's Hospital, Melbourne. Dr Dabscheck completed a clinical fellowship in epilepsy and neurophysiology at Boston Children's Hospital/Harvard Medical School, in Massachusetts, USA. He also completed a clinical fellowship in neurofibromatosis 1 and neuro-oncology at Boston Children's Hospital/Harvard Medical School. Dr Dabscheck remains active in clinical research both as a member of the NF-1 team at RCH/MCRI and the Children's Epilepsy Program at RCH, Melbourne.

Dr Belinda Barton

Dr Belinda Barton, Department Head & Psychologist, Children's Hospital Education Research Institute (CHERI) and NF1 Neurocognitive Research Team Leader, Institute for Neuroscience and Muscle Research (IMNR), The Children’s Hospital at Westmead, Sydney Australia.

Dr Barton is a paediatric psychologist with a major research interest in understanding the cognitive and psychosocial aspects of genetic and chronic childhood conditions, as well as interventions that aim to improve the quality of life of children. She has a particular and long standing clinical and research interest in neurofibromatosis type 1 (NF1). She established the NF1 Educational Clinic in 1997 and is the team leader of cognitive research on NF1 at The Children’s Hospital at Westmead. She was also an investigator and study co-chair of an international clinical trial investigating the efficacy of lovastatin as a treatment for learning and attention deficits in children with NF1. 

Dr Jonathan M. Payne

Dr Jonathan Payne is a Senior Research Fellow at the Murdoch Children’s Research Institute (MRCI) and a Clinical Neuropsychologist at the Royal Children’s Hospital, Melbourne Australia.

His research focuses on the developmental neuroscience and psychology of genetic disorders, with a particular focus on neurofibromatosis type 1 (NF1). He is co-Leader of Child Neuropsychology Group at MCRI, where he also heads the NF1 Research Team. His work focuses on identifying markers of risk for neurocognitive and neuropsychiatric symptoms in genetic and neurodevelopmental disorders by drawing on a range of clinical, cognitive and neuroimaging variables. The ultimate aim of his research is to improve patient-level outcome prediction, clinical trial design and provide evidence for child-focused interventions. 

 

 

 

 

Professor Andrew Kaye

Professor Andrew H. Kaye is the Head of the Department of Surgery at the University of Melbourne.

He is a neurosurgeon, and was Director of the Department of Neurosurgery at The Royal Melbourne Hospital from 1992-2017. He graduated from The University of Melbourne in 1973, and subsequently trained in Neurosurgery at The Royal Melbourne Hospital and The Royal Children’s Hospital in Melbourne.  He undertook further neurosurgery training in Oxford, London and at The Cleveland Clinic.  On returning to Australia in 1983 he was appointed Neurosurgeon at The Royal Melbourne Hospital, and commenced research into neuro-oncology at the Ludwig Institute for Cancer Research.   He was appointed Professor of Neurosurgery at The University of Melbourne in 1992, and the James Stewart Professor of Surgery and Head of the Department of Surgery at The University of Melbourne, Royal Melbourne Hospital in 1997. 

His main clinical and research interest involves neuro-oncology, cerebrovascular disease, complex skull bas surgery and traumatic brain injury.  He has numerous national and international awards including the John Mitchell Crouch Fellowship by the Royal Australasian College of Surgeons, and in 1997 was appointed the Sir Arthur Sims Commonwealth Travelling Professor.  In 2003 the American Association of Neurological Surgeons honoured him with the Ronald Bittner Award for contributions to the treatment of brain tumours and in 2006 the Paul Bucy Award for his contribution to neurosurgery education. In 2011 he was awarded the Medal of Honour from the World Federation of Neurosurgical Societies for ...”outstanding contribution to neurosurgery.”  He was awarded the Commonwealth of Australia Centenary Medal in 2003 and Order of Australia in 2004.  He was the Honoured Guest of the American Congress of Neurosurgery for 2013. In 2015 he was awarded the American Association of Neurological Surgeons International Lifetime Recognition Award.

He is a Director of the Hawthorn Football Club, Australian Football League.  He is the past President of the Asian Australasian Society of Neurological Surgeons and is Chair of the Nominating Committee of the World Federation of Neurosurgical Societies. He is the Foundation Editor-in-Chief of the Journal of Clinical Neuroscience.  He has authored and co-authored over 250 journal articles and book chapters, as well as ten books including being the co-author of “Brain Tumours”, a text recognised as being the definitive work on the subject.