NF Clinical Symposium

Media Release / 28 Aug 2017

The Children’s Tumour Foundation is proud to announce, the inaugural Australian Neurofibromatosis Clinical Symposium

Date: Friday 20th October 2017
Venue: Perpetual (Angel Place, Level 18, 123 Pitt Street, Sydney NSW 2000)
Time: 9:00am - 5:00pm
Who: This event is exclusively for Doctors, Clinical Specialists and Scientists in the field of Neurofibromatosis.

The Keynote speaker for this inaugural symposium is proudly announced as Professor Rosalie Ferner from the Guys and St Thomas’s Hospital in London.

Following the keynote address, there will be presentations outlining the latest clinical thinking on research findings and treatment approaches for patients diagnosed with Neurofibromatosis (NF), both types NF1 and NF2. The goal of this symposium is to bring together researchers and clinicians with the intention of improving collaboration in this diverse clinical community.

    

AGENDA

SPEAKERS

Keynote Speaker: Professor Rosalie Ferner

Professor Rosalie Ferner graduated in modern languages from University College London and studied Medicine at the Medical School of Newcastle on Tyne. She undertook training in general medicine in Newcastle and gained experience in oncology at the Royal Marsden Hospital, London.

She was accredited in neurology in 1996 and has been a consultant neurologist at Guy’s and St Thomas’ since 1999.

She was appointed Professor of neurology in 2010 and is chairman of the medical advisory board of the national Neuro Foundation. She has been national lead for the nationally commissioned NF1 service since 2009 and lead for the London NF2 service since 2010. The aim of these national neurofibromatosis services is to give expert, multidisciplinary, holistic care for people with complex, multi-system disease.

Dr Mimi (Yemima) Berman BScHons BMBS PhD FRACP Clinical Genetics

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 a member of the Neurodegenerative and Neuromuscular Governance Group of the Agency for Clinical Innovation. This group are working within NSW Health to improve the care of patients with NF. Dr Berman is the Medical Advisor to the Australian Children’s Tumour Foundation. 

 

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.

Associate Professor John Grigg   MBBS (QLD) MD (SYD) FRANZCO FRACS Ophthalmology

John Grigg is Head of the Discipline of Ophthalmology at the University of Sydney and Consultant Ophthalmologist Sydney Eye Hospital and The Children’s Hospital Westmead. The Discipline of Ophthalmology oversees all ophthalmic teaching and research at the University of Sydney including The Save Sight Institute. The Institute (SSI) has grown to be the equal leading ophthalmic research institute in Australia.

John Grigg completed his vocational ophthalmology training on the Sydney Eye Hospital program. Further subspecialty clinical training Fellowships in glaucoma, paediatric ophthalmology and visual electrophysiology were undertaken in Australia and the UK.

His main areas of research are in genetic eye disease, congenital cataract, children’s glaucoma and electrophysiology of the visual system. He is a member of the Eye genetics research group that brings together the Save Sight Institute, Children’s Medical Research Institute and Children’s Hospital Westmead. He is Head of the clinical visual electrophysiology service at Sydney Eye Hospital and Children’s Hospital Westmead and a

He has been the Postgraduate coursework coordinator since 2008 for the Discipline of Ophthalmology. During this time, he has overseen the expansion of the postgraduate program and the introduction of new degrees including an International Ophthalmology program. There are currently 80 Masters students studying in this program.

Dr Katrina Morris BMedSci MBBS (Hons) PhD FRACP

Dr Morris is a general neurologist with a particular interest in Neurofibromatosis, Neurogenetics and Neuro-Oncology. Dr Katrina Morris completed her neurology training in Sydney at St Vincents, Royal Prince Alfred and Concord Repatriation General Hospitals before taking up the ANZAN fellowship at the John Radcliffe Hospital in Oxford, UK. She then undertook a clinical research fellowship in Neuro-Oncology in Oxford. Her research on the UK Neurofibromatosis type 2 population treated with bevacizumab led to a PhD awarded in 2017. Dr Morris consults at the Chris O’Brien Life House and the NF clinic at Royal North Shore Hospital. She is currently a locum staff specialist at Concord Repatriation General Hospital. 

Dr Mark Wong BSc (Med) MBBS FRACP PhD

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.

Biography Associate Professor Gayle Fischer M.B.B.S  M.D. F.A.C.D. 

Gayle Fischer is an associate professor in Dermatology at Sydney Medical School Northern, a campus of the University of Sydney Medical School. She is a clinician at The Royal North Shore Hospital in Sydney, a teaching hospital of the university of Sydney and runs a vulval disease and paediatric service at the hospital in addition to a private practice specialising in paediatric and vulval dermatology.

Professor Fischer runs the NF skin clinic at RNSH along with Dr Berman, offering treatments to reduce disfigurement in NF1.She holds a senior doctorate (Doctor of Medicine) from the University of Sydney for her thesis “Vulval Disease in adults and children.” She has a 20 year career in researching and publishing and is the author of over 50 research articles and chapters on in peer reviewed journals and textbooks. 

Her research interests are Neurofibromatosis, lichen sclerosus, chronic vulvovaginal candidiasis, quality of life in vulval diseases, vulval disease in children and corticosteroid phobia.

She is a Fellow of the Australasian College of Dermatologists and has previously been their Chief Examiner and Dean of Education.

A/Prof Aaron Schindeler: Dietary intervention for NF1 muscle weakness

A/Prof Aaron Schindeler is a Senior Research Scientist at The Children’s Hospital at Westmead and the Director of Basic Research in the Centre for Children’s Bone & Musculoskeletal Health (CCBMH). Aaron 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 Belinda Barton: Cognitive and Psychosocial Impact of NF1 and Therapeutic Approaches

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. 

Jonathan M. Payne, PsyD. Murdoch Children’s Research Institute, The Royal Children’s Hospital; Department of Paediatrics, The University of Melbourne, Australia.

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. 

Ashley Crook, Genetic Counsellor HGSA

Ashley graduated with a Masters of genetic counselling at the University of Melbourne. She works as a senior genetic counsellor at the department of clinical genetics at Royal North Shore Hospital. In 2016, she assisted in the development of evidence-based cancer risk management guidelines for NF1 and NF2 with the eviQ multidisicplinary cancer genetics reference committee.

 

Dr Gabriel Dabscheck MBBS Hons FRACP MClinEpi

Dr Gabriel Dabscheck is a specialist Paediatric Neurologist and Epileptologist neurologist at The Royal Children's Hospital and St Vincent'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 MAREE FLAHERTY                                               MB, BS (HONS) FRANZCO, FRACS, FRCOPHTH

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 Simone Ardern-Holmes

On a background of research in biological sciences, Dr Ardern-Holmes graduated from physician training at The University of Auckland NZ, in 2000, motivated by a desire to translate advances in science and research into tangible benefits for patients.  Subspecialty training in paediatrics and child neurology followed at Sydney Children’s Hospital and The Children’s Hospital Boston, with evolving interests in neuro-oncology, neurocutaneous disorders and other neurodevelopmental disorders with and without epilepsy.  Fellowship training was completed in the Neurogenetics Research Unit/Institute for Neuroscience and Muscle Research at The Children’s Hospital at Westmead, with a focus on understanding the natural history of tumours associated with Neurofibromatosis Type 1 and Type 2, optimising surveillance for tumour-related complications, and establishing use of novel medications, with careful evaluation of efficacy and tolerability.   Dr Ardern-Holmes has held an appointment as child neurologist at The Children’s Hospital at Westmead since 2010, including participation in the care of children with complex NF1/2 seen in the Neurogenetics Clinic.  Her ongoing passion lies in the critical evaluation of diagnostic and treatment approaches, with a view to improved care and quality of life for children and families in the future.

 

Dr Mathilda Wilding MB BS

Dr Mathilda Wilding obtained her Bachelor of Medicine/Bachelor of Surgery at the Australian National University in Canberra. She completed her speciality training in Medical Oncology at Westmead Hospital.  Mathilda will complete her specialty training in Clinical Genetics this year, with a sub-specialty in Cancer Genetics. Mathilda is currently a Clinical Genetics Fellow at Royal North Shore Hospital, where she developed an interest in the management of individuals with complex NF1.

Associate Professor Julie McGaughran    Clinical Genetics

Associate professor Julie McGaughran is the Director of Genetic Health Queensland which is Queensland’s sole state-wide provider of clinical genetics service. She trained in Manchester in the UK and was involved with the NF1 register there

She is past President of the HGSA and the Australasian Association of Clinical Geneticists and a current member of the council of the European Society of Human Genetics.

She has an interest in paediatric and cardiac genetics and developing genetic services across Australia.

Dr Hannah Jones

Dr Hannah Jones started her paediatric neurology training at the Starship Children’s Hospital in Auckland, New Zealand. She completed a year of epilepsy training in 2016 at The Children’s Hospital at Westmead as the George Gregan Foundation Epilepsy Fellow. She is currently working as the Neurogenetics Fellow at the Children’s Hospital at Westmead and is studying splice site defects in the DMD gene at the Institute of Neuroscience and Muscle Research.  

Clare Wong – Final Year Master of Genetic Counselling Student

Claire Wong is a final year Master of Genetic Counselling student at the University of Sydney. Her Masters research explores the perspectives of individuals affected by Neurofibromatosis Type 1 (NF1). She is currently appointed as a Clinical Research Coordinator at the Victor Chang Cardiac Research Institute, investigating the genetic basis of spontaneous coronary artery dissection. Prior to her Masters, she was awarded First Class Honours in Molecular Biology and Genetics at the same institution. Her Honours research focused on investigating the roles of RNA silencing proteins, through which she accumulated extensive training in molecular techniques.

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