“Cleared up some doubts”, was one participant’s comment after the MND NSW Ask the Experts Forum at West Ryde in August. This Forum, held annually, aims to provide people with MND, their family and friends the opportunity to hear from experts in the fields of MND research and neurology and to ask questions.
The first speaker, Dr Nimeshan Geevasinga, Neurologist, Neurophysiologist and Senior Clinical Lecturer, University of Sydney and MND Multidisciplinary Clinic St Joseph’s Hospital, provided a clinical perspective and dipped into advances in MND diagnostics, cause hypotheses and broad research developments. The second speaker, Dr Kelly Williams, Research Fellow, Faculty of Medicine and Health Sciences Macquarie University, provided an overview of genetics before focusing on why genetic research is relevant to all people with MND and how it informs other areas of MND research. The final speaker, Associate Professor Roger Pamphlett, Neurologist and Neuropathologist, Brain and Mind Centre University of Sydney, spoke of the continuing search for environmental and risk factors in MND and his current work on ALS Quest (www.alsquest.org), an online survey tool collecting data for risk factor analysis.
A highlight of Ask the Experts is the time provided for the audience to ask questions of the speakers. There were many questions including:
Q. What is the effect of MND on the bladder and bowel?
A. MND can cause spastic bladder in some people - see a urologist because there are medications that may assist.
Q. What is happening with the antiretroviral therapy trial for MND?
A. Plans are underway (see page 8 of this edition of Forum).
Q. Are there tests to identify factors which precede late onset in someone with an MND identified gene?
A. None identified as yet.
Q Is there a benefit of finding out if you have a gene mutation if there is familial MND in your family?
A. Speak to a genetic counsellor - this is a personal decision and could affect lifestyle choices and life insurance.
In their evaluations of the day, participants rated the event highly. To the question ‘What have you gained by attending Ask the Experts today?’, many responses related to increased information, knowledge and understanding about MND and MND research advances. Others commented they appreciated being provided with the opportunity to speak to experts, other families affected by MND and MND NSW staff; that the speakers presented in a way that was ’understandable’; and that there was a convivial atmosphere. Many also commented they felt better equipped to explain MND to others and share the information with family and friends.
You can watch videos of the presentations and the associated question and answer sessions on the MND NSW Youtube channel www.youtube.com/mndnsw after 1 September 2016.