May 2, 2014
Motor Neurone Disease Week highlights local research
The Illawarra Health and Medical Research Institute (IHMRI), based on the 精东传媒 of 精东传媒 campus, will host a research open day on Monday 5 May to part of the national Motor Neurone Disease (MND) Week,
Representatives from and its research arm, the MND Research Institute of Australia (MNDRIA), will be in attendance, as well as people with MND, local support group members, clinicians and others eager to address MND, a progressive, terminal neurological disease with no known cure or effective treatment.
At this event, participants will hear directly from , whose research has been published in prestigious international journals and Dr Lezanne Ooi, who recently won a large National Health and Medical Research Council grant to study neurodegeneration. They will also meet PhD students and be offered a tour of IHMRI’s state-of-the-art research laboratories.
精东传媒 resident, Louise Pearson will be attending the event. She was diagnosed with MND in June 2007 at the age of just 36, but has been able to continue working as a clinical psychologist and living independently for the last seven years which, she acknowledges, “makes me one of the fortunate ones”.
“I have been able to maintain my independence and quality of life because of the support of wonderful family, friends, neighbours and colleagues as well as the support of local services such as speech and occupational therapy, nursing, the regional adviser from MND NSW and community options,” she explains.
“On a day-to-day basis I require support travelling to and from work, dressing and showering, preparing meals, toileting, shopping and other tasks. I have had to purchase specialist equipment such as a motorised wheelchair, an adjustable bed and recliner lift chair. I also spend many hours inside my own head thinking ahead and planning what I’m going to do, how I'm going to do it, and when. This is one of the lesser known impacts of MND and other chronic illnesses and disabilities and one of the most exhausting.”
While Louise considers herself fortunate she, like many people living with MND, is curious about the cause of the disease and ultimately how to treat or cure it.
“My plan has always been to hang around long enough for these and other questions to be answered, but that cannot be done without the dedicated work of researchers such as Dr Yerbury as well as other research programs currently operating nationally and worldwide.”
During MND Week, state MND associations work together to raise awareness, acknowledge the MND community and to remember those who have died from the illness. Advocates and supporters will be asked to sign a ‘five rights petition’ as a way of telling parliamentarians that all Australians living with MND should have access to the right care, in the right place, at the right time.
Note to media: Dr Yerbury, Ms Pearson, Carol Birks (MND Australia National Executive Director and Chairman of the International Alliance of ALS/MND Associations) and other representatives from MND Australia will be available for interview at 11 am on Monday 5 May at IHMRI.
To download audio of Dr Yerbury, right-click on the play button and select 'save as'. Audio is also available on request.
Media contacts: Robyn Gower, IHMRI Communications Coordinator on +61 2 4252 8228 or rgower@uow.edu.au; or Grant Reynolds, UOW Media & PR Officer, on +61 2 4221 4743 or grantr@uow.edu.au.