Event Date 12 Aug 2019 (10:30 am - 3:00 pm)
Register by 7 Aug 2019 12:00 am
Location Ryde Eastwood Leagues Club

Hear from experts in the fields of MND research and neurology and to ask questions at this Forum. This is an opportunity for people living with MND, their family, and friends to learn the latest developments in MND.

For those who are shy about talking in public, have speech difficulties or have a query they would rather have someone else ask, you can pass your question onto MND NSW staff and they will ask the question(s) on your behalf. Remember your question may be just the one others want to ask!

There is no charge for you to attend this Forum but you will need to RSVP by 7 August to reserve your place. Morning tea and lunch are provided. To RSVP or for more information contact This email address is being protected from spambots. You need JavaScript enabled to view it. or ph. 8877 0999 or Freecall 1800 777 175.

View or download program

10am Tea and coffee on arrival

10.30 Welcome - and overview of day

10.35 What are the risk factors for MND? Results from an international online survey - Associate Professor Roger Pamphlett

11.15 Question time

11.40 Advance Care Planning: returning control to people with MND and their carers - Professor Colleen Cartwright

12.15pm Question time

12.30 Lunch

1.15 A fine balance: Navigating hope in stem cell science - Associate Professor Megan Munsie

2.00 Question time

2.20 Closing address

 

About the speakers

Associate Professor Roger Pamphlett of the Brain and Mind Centre at University of Sydney is a neurologist and neuropathologist. Roger has a longstanding interest in finding the causes of MND. His current research projects include the “ALS Quest”, an online international questionnaire looking for environmental risk factors for MND, as well as seeking to understand potential environmental risk factors that may precipitate the disease. His work also involves analysing toxins within the nervous system of people with MND, examining the link between exercise and MND and using advanced genetic techniques to look for gene variants that could predispose people to developing MND.

Professor Colleen Cartwright is Emeritus Professor and Chair of the Human Research Ethics Committee of Southern Cross University and Principal Director of Cartwright Consulting Australia. She has extensive teaching and research experience in ageing, ethics and medical decisions at the end of life, at national and international levels, with publications in major journals and several book chapters. Professor Cartwright designed the Advance Health Directive and Enduring Power of Attorney documents that are part of the Queensland legislation and amended the Queensland Advance Directive to meet NSW legislative provisions. She regularly runs information and training sessions for community and health professional groups on ethical and legal issues relating to care at the end of life, including advance care planning, what is/is not euthanasia, informed consent and capacity, with particular focus on the special needs of people with dementia and their carers.

Associate Professor Megan Munsie is Deputy Director of the University of Melbourne’s Centre for Stem Cell Systems where she leads a research program in the ethical, legal and social implications of stem cell research. She also heads the Engagement, Ethics and Policy Unit of the Australian Government funded Stem Cells Australia initiative. As a trained developmental biologist, she combines her scientific expertise with a deep understanding of the ethical and regulatory considerations required to facilitate responsible research in stem cell science and its clinical translation. She has co-authored numerous educational resources for the public, health and educational professionals; contributed to the development of policy at a domestic and international level; is a member of several international multidisciplinary research teams exploring impact of stem cell research and regularly provides information to Australian patient advocacy groups and community members about stem cell science. In 2018 she was awarded the Public Service Award from the International Society for Stem Cell Research in recognition of her contribution to the field.
Event Date 12 Aug 2019 (10:30 am - 3:00 pm)
Register by 7 Aug 2019 12:00 am
Location Ryde Eastwood Leagues Club