11th International Conference on Frontotemporal Dementias11-14 November 2018 | International Convention Centre Sydney | Australia

Dementia Support Australia

Melissa has a doctorate in Exercise and Sport Science and is also a registered Occupational Therapist. She currently works with Dementia Support Australia as a Dementia Care Consultant. This role specialises in providing psychosocial recommendations for The Dementia Behaviour Management Advisory Service (DBMAS) and Severe Behaviour Response Team (SBRT).  These services aim to improve the quality of life and care for people with dementia and their caregivers, assist and support aged care providers in improving care for people with dementia and related behaviours and ensure care services for people with dementia are responsive to their individual and diverse needs and circumstances. She is also collaborating with key researchers at the Dementia Collaborative Research Centre to update the resource, “Behaviour Management: A guide to good practice”.

Carol trained and worked as a registered nurse at St Bartholomew’s Hospital, London. She worked in a variety of specialties including oncology, aged care and research before focusing on palliative care nursing. Carol graduated from the Australian Catholic University with a Graduate Diploma in Palliative care in 1996.

Carol has been working with people living with motor neurone disease since January 2000 when she took on the role of managing and developing the MND Association of NSW Support Service. In October 2006 she joined MND Australia as Chief Executive Officer.
 

Carol joined the board of the International Alliance of ALS/MND Associations in 2010 and was the chairwoman from December 2013 to December 2017. Carol has worked to encourage and support the establishment of new and emerging ALS/MND associations globally, with particular focus on the Asia Pacific region, and to promote sharing of expertise and resources through the International Alliance partnership and mentoring program.

Mayo Clinic
USA

Bradley F. Boeve, M.D., is a consultant in the Department of Neurology and Center for Sleep Medicine at Mayo Clinic in Rochester, Minnesota. Dr. Boeve also serves as chair of the Division of Behavioral Neurology and is co-director of the Clinical Core of Mayo's Alzheimer's Disease Research Center. He joined the staff of Mayo Clinic in 1997 and holds the academic rank of professor of neurology, Mayo Clinic College of Medicine and Science. Dr. Boeve is recognized with the distinction of the Little Family Foundation Professorship in Lewy Body Dementia.

Dr. Boeve received his M.D. from the University of Florida. He further trained at Mayo Clinic School of Graduate Medical Education where he completed internship in internal medicine, residency in neurology, and fellowships in both behavioral neurology and sleep medicine.?

Dr. Boeve's clinical and research interests include normal aging, mild cognitive impairment, Alzheimer's disease as well as the non-Alzheimer's degenerative dementias such as dementia with Lewy bodies, frontotemporal dementia, primary progressive aphasia, corticobasal degeneration, progressive supranuclear palsy and posterior cortical atrophy. He is an expert on neurologically based sleep disorders such as REM sleep behavior disorder, narcolepsy and restless legs syndrome. Dr. Boeve also has an interest in prion disorders, neurogenetics and autoimmune/inflammatory encephalopathies.

His research is funded by the National Institute on Aging and National Institute of Neurological Disorders and Stroke. He has coauthored over 500 peer-reviewed papers and over 30 book chapters, and has co-edited 2 books.

In addition to his clinical and research activities, Dr. Boeve is active in education. He is director of the Behavioral Neurology Fellowship Program and has teaching and examining privileges in Clinical and Translational Science at Mayo Clinic Graduate School of Biomedical Sciences. He also provides mentorship to dozens of fellows, many of whom hold academic positions in the United States and abroad.

Dr. Boeve's memberships in professional organizations and foundations include the American Medical Association, American Academy of Neurology, American Neurological Association, American Academy of Sleep Medicine, Movement Disorders Society, Society for Behavioral and Cognitive Neurology, Alzheimer's Association International Society to Advance Alzheimer's Research and Treatment (ISTAART), International Society for Frontotemporal Dementias, Association for Frontotemporal Degeneration, Tau Consortium and Lewy Body Dementia Association.

Bradley F. Boeve, M.D., is a consultant in the Department of Neurology and Center for Sleep Medicine at Mayo Clinic in Rochester, Minnesota. Dr. Boeve also serves as chair of the Division of Behavioral Neurology and is co-director of the Clinical Core of Mayo?s Alzheimer?s Disease Research Center. He joined the staff of Mayo Clinic in 1997 and holds the academic rank of professor of neurology, Mayo Clinic College of Medicine and Science. Dr. Boeve is recognized with the distinction of the Little Family Foundation Professorship in Lewy Body Dementia.

Dr. Boeve received his M.D. from the University of Florida. He further trained at Mayo Clinic School of Graduate Medical Education where he completed internship in internal medicine, residency in neurology, and fellowships in both behavioral neurology and sleep medicine.?

Dr. Boeve's clinical and research interests include normal aging, mild cognitive impairment, Alzheimer?s disease as well as the non-Alzheimer?s degenerative dementias such as dementia with Lewy bodies, frontotemporal dementia, primary progressive aphasia, corticobasal degeneration, progressive supranuclear palsy and posterior cortical atrophy. He is an expert on neurologically based sleep disorders such as REM sleep behavior disorder, narcolepsy and restless legs syndrome. Dr. Boeve also has an interest in prion disorders, neurogenetics and autoimmune/inflammatory encephalopathies.

His research is funded by the National Institute on Aging and National Institute of Neurological Disorders and Stroke. He has coauthored over 500 peer-reviewed papers and over 30 book chapters, and has co-edited 2 books.

In addition to his clinical and research activities, Dr. Boeve is active in education. He is director of the Behavioral Neurology Fellowship Program and has teaching and examining privileges in Clinical and Translational Science at Mayo Clinic Graduate School of Biomedical Sciences. He also provides mentorship to dozens of fellows, many of whom hold academic positions in the United States and abroad.

Dr. Boeve's memberships in professional organizations and foundations include the American Medical Association, American Academy of Neurology, American Neurological Association, American Academy of Sleep Medicine, Movement Disorders Society, Society for Behavioral and Cognitive Neurology, Alzheimer's Association International Society to Advance Alzheimer's Research and Treatment (ISTAART), International Society for Frontotemporal Dementias, Association for Frontotemporal Degeneration, Tau Consortium and Lewy Body Dementia Association.

Association for Frontotemporal Degeneration (AFTD)

Helen-Ann Comstock, founder of the Association for Frontotemporal Degeneration (AFTD).

Comstock’s husband was diagnosed with FTD at age 44 in 1978 and died seven years later. In 1985 she became the first Executive Director of the Greater Philadelphia Chapter of the Alzheimer’s Association (now the Delaware Valley) and served in that capacity until she retired in 2000.   During that time she was active in Pennsylvania state advocacy issues, helping to design the Pennsylvania Family Caregiver Support Program and coordinating the successful effort to pass enabling legislation.  In 2002 Comstock founded the Association for Frontotemporal Degeneration (AFTD) and served as its board chair until 2010.  Comstock continues to serve on AFTD’s Board of Directors and spearheads the organization’s international efforts.  She organized World FTD United.  She is a graduate of Gettysburg College.   

Personal stories - Carers Day

The Association for Frontotemporal Degeneration
USA

Susan Dickinson, MS, CGC, AFTD Chief Executive Officer (CEO), joined AFTD in February 2008. A certified genetic counselor, she brings more than two decades of experience facilitating communications among lay, scientific and medical communities. Under her leadership, AFTD has expanded dramatically in scale and impact, from a $400,000 organization with a part-time staff of three to a $5 million organization with 20 full-time staff. During her tenure, AFTD has expanded programs to meet and advocate for the needs of FTD families, and invested in specific strategies to advance FTD research and drug development, including two multi-year, multi-million dollar research initiatives targeting FTD diagnosis and treatment. Ms. Dickinson also serves on the Advisory Council for the National Institute for Neurological Disorders and Stroke.  She holds an MS in genetic counseling from Arcadia University and BA in biology and psychology from Swarthmore College.

Glenda Halliday is a NHMRC Senior Principal Research Fellow and Professor of Neuroscience at the Brain and Mind Centre, the University of Sydney (joined in 2016). Her career as a fulltime research fellow in Australia has involved determining the brain changes in Parkinson’s disease (initially at Flinders University of South Australia and the University of Sydney before establishing the Sydney Brain Bank at NeuRA), in chronic alcoholism (at the University of Sydney), and in degenerative dementias (at NeuRA and now at the University of Sydney).
Her research has highlighted broader pathological involvement in Parkinson's disease and especially in dementia with Lewy bodies, with recent work suggesting that immunity is involved. This work has contributed to diagnostic criteria for Parkinson’s disease, dementia with Lewy bodies and frontotemporal dementia syndromes. She currently leads a large research group tackling non-Alzheimer's neurodegeneration that study clinical patients and use patient-derived and experimental models to progress knowledge on- early definitive diagnosis; factors influencing the selective nature of the nervous system degeneration; mechanisms that propagate degeneration between brain regions; the comparative toxicity of the major proteins involved; and the lack of tools to monitor disease modifying treatments.

Brad Hazzard is a senior Minister in the NSW Government and in 2017 was appointed as Minister for Health and Minister for Medical Research.

He oversees record investment in Health infrastructure and services which has resulted in a hospital building boom across the State and the funding of thousands of new frontline positions.

NSW also has a robust and innovative medical research knowledge economy which the NSW Government seeks to encourage and expand.

Brad started his professional life as a science teacher at North Sydney Boys’ High School. He later studied law at the University of NSW and was admitted as a solicitor in 1977. He also holds a Master of Laws from the University of Sydney.

He entered Parliament in 1991 as the State Member for Wakehurst, on Sydney’s Northern Beaches.

Brad has previously served as Minister for Family and Community Services and Minister for Social Housing, Attorney General and Minister for Justice and as Minister for Planning and Infrastructure and Leader of the Legislative Assembly.

University of Sydney
Australia

John qualified in Medicine from London University with honours (1975) and undertook periods of psychiatric and neurological raining in Southampton, Oxford and San Diego and obtained his MD in 1988. From 1997 to 2007 he was the MRC Professor of Behavioural Neurology with a joint appointments in the Department of Clinical Neuroscience at Addenbrooke's Hospital and the MRC Cognition and Brain Sciences Unit Cambridge where he lead a multidisciplinary research group. In 2007 he moved to Sydney as Federation Fellow and professor of Cognitive Neurology where he established FRONTIER a research group dedicated to Frontotemporal Dementia. In 2017 FRONTIER transferred to the Brain Mind Centre, University of Sydney where he holds a chair in Cognitive Neurology. He has a longstanding interest in many aspects of cognition particularly in the context of neurodegenerative disorders. His current research focuses on aspects of frontotemporal dementia. He is the author of 600 journal articles, including (total citations over 40,000, h-index 120) and five books including Cognitive Assessment for Clinicians (OUP 2007), Early Onset Dementia (OUP) Frontotemporal Dementia Syndromes (CUP, 2007). His real passions remain jazz, cricket, ceramics and above all his family.

Personal stories - Carers Day

Eastern Cognitive Disorders Clinic

Melissa has worked with the Eastern Cognitive Disorders Clinic in Melbourne Australia for over 10 years. This clinic specialises in the diagnosis and ongoing management of FTD syndromes. In this role, she helped to establish the first FTD Carer Support groups in Australia. Melissa was also the National Coordinator for the Australian FTD Association until February 2018. Prior to this, she was a Behaviour Consultant and Victorian State Manager for the Dementia Behaviour Management Advisory Service, during which time she commissioned/co-authored the FTD Toolkit (www.ecdc.org.au/ftdtoolkit)

Dementia Australia

Susan McCarthy is the Executive Director, Client Services for Dementia Australia.  

Susan has responsibility for nationwide support services and education for people living with dementia, their carers and families.

Susan manages the delivery of the national dementia helpline, the younger onset dementia key worker program, dementia advisory services, counselling, and education for people living with dementia, carers and community.

Susan has a Bachelor of Science, University of NSW and a Masters of Public Health with the University of NSW.

Susan has extensive experience in developing and implementing education and service delivery projects in Asia Pacific, South East Asia and Eastern Mediterranean, Latin America and Africa. Prior to joining Alzheimer’s Australia, Susan worked for large corporates and international NGO in various program management and General Manager positions. The roles have allowed Susan to work within many culturally diverse environments, including the implementation of services, governance systems and program management frameworks within Australia, Asia Pacific, South East Asia, Eastern Mediterranean, Latin America and Africa.

Dr. Mendez is the Director of the Behavioral Neurology Program at UCLA and the Director of Neurobehavior at the V.A. Greater Los Angeles Healthcare System. He has a background in experimental psychology and expertise in the behavioral and cognitive aspects of dementias.  His research involves clinical and cognitive aspects of frontotemporal dementia and early-onset Alzheimer’s disease variants.  Dr. Mendez received his M.D. from the University of Texas and his Ph.D. from Case Western Reserve University, and he has co-authored three books (one its fourth edition) with over 300 publications and chapters.  Dr. Mendez has also been the director of one of the most well-known Behavioral Neurology Fellowships in the United States.

HammondCare

Claire O’Connor is an occupational therapist who completed her PhD in 2017 investigating behaviour, function and supportive interventions in frontotemporal dementia. Dr O’Connor is now a research fellow at the Centre for Positive Ageing, HammondCare, and a Conjoint Lecturer at the School of Public Health and Community Medicine, University of New South Wales. She has a particular interest in younger onset dementia and non-pharmacological interventions involving people living with dementia and their family caregivers. Last year she coordinated the development of a handbook for supporting independence and function for people living with dementia, a freely available resource: https://www.hammond.com.au/research/dementia-resources/supporting-people-living-with-dementia-through-reablement

Dr Kirrily Rogers is an early career researcher and Clinical Neuropsychologist based in Melbourne. She recently completed a PhD focused on spouses' experience of bvFTD prior to diagnosis. She has also worked as a Clinical Neuropsychologist as part of a multidisciplinary specialist dementia diagnosis service (Eastern Cognitive Disorders Clinic) and has facilitated FTD carer support groups for the past 3 years. Her current research explores the experience of grief and bereavement in FTD syndromes.

War Memorial Hospital, Waverley
Australia

Cathleen Taylor-Rubin qualified as a speech pathologist in 1978 and has worked with people with aphasia for more than twenty five years. Her particular area of interest and expertise is Primary Progressive Aphasia. She is a Certified Practicing Speech Pathologist and the Clinical Lead of the War Memorial Hospital Primary Progressive Aphasia and Related Disorders Clinic in Sydney. Cathy is also a PhD candidate in the Department of Cognitive Science at Macquarie University and her research investigates behavioural treatments for Primary Progressive Aphasia. 

University of Oxford

Martin Turner is Professor of Clinical Neurology & Neuroscience within Oxford University’s Nuffield Department of Clinical Neurosciences, consultant neurologist to the John Radcliffe Hospital, and co-director of the Oxford Motor Neurone Disease Care & Research Centre. As a clinician scientist working with MND patients for nearly 20 years, his focus is the development of biomarkers from advanced neuroimaging and biofluid assay, in order to accelerate therapy discovery. He currently chairs the Research Committee of the Association of British Neurologists.

Dementia Support Australia

Adrian has worked as a Consultant for the Dementia Behaviour Management Advisory Service for the past three years, including in rural and remote Australia. Prior to this he gained valuable experience working with people living with dementia as an Occupational Therapist in New Jersey, USA. Adrian has a passion for understanding and addressing the impact of behaviours in dementia and providing practical psychosocial support to health professionals, care workers and family carers.

Melbourne Neuropsychology Services

Dr Tracey Wardill is Clinical Neuropsychologist with over 30 years experience. She is a principal neuropsychologist with Melbourne Neuropsychology Services. She has a particular interest in the diagnosis of dementia, including young onset dementias. She has worked extensively with FTD patients and their families.  In 2008 Tracey was awarded a Churchill Fellowship to study the diagnosis and management of FTD in the US and UK. In 2009 she established the first support group for FTD carers in Victoria. She currently facilitates an FTD carer support group in regional Victoria. She is an active member of World FTD United, and a Board Member of the Australian Frontotemporal Dementia Association (AFTDA).

FTD Disorders Registry

Dr. Wheaton has more than 20 years of clinical research experience and genetic counseling in the field of rare neurodegenerative diseases, acting as investigator for clinical trials and genetic epidemiology studies, as well as authoring numerous genotype-phenotype papers. Dr. Wheaton targeted her field of interest to FTD research in January 2016. As Director of the FTD Disorders Registry, she works directly with persons diagnosed with FTD and their families, leads outreach efforts to the lay and health professional communities, and actively works with clinicians, researchers and organizations interested in using the Registry to answer important research questions and to support clinical trials.