What is MND?
Motor Neurone Disease (MND) or Amyotrophic Lateral Sclerosis (ALS)
is the name given to a group of diseases in which the nerve cells (neurones) controlling the muscles that enable us to move around, speak, swallow and breathe fail to work normally and eventually die. With no nerves to activate them the muscles gradually weaken and waste. It is also known as Lou Gehrig's Disease in the US, named after the famous American Baseball player who succumbed to the disease.
With no residual muscles or strength, MND patients are left motionless,mute, and trapped within their once active bodies. In the majority, the mind and intellect are left intact, with the sufferer bearing witness to it all.
The patterns of weakness and rate of progression vary from person to person, and while some people can live a long time with MND, the average life expectancy is 2 to 5 years from diagnosis.
MND was first described by Jean-Martin Charcot in 1869 and there is still no known cause or cure for this devastating disease and treatment options are very limited. Effective management of the disease by a variety of specialist health professionals is vital to maintaining quality of life and assisting with symptom control.
Recent data around the incidence of mortality demonstrate an increase in the number of deaths from MND in Australia during the last decade (Australian Institute of Health and Welfare). The ageing population and interventions that improve life expectancy in MND are likely to result in a steady increase in the number of people living with MND in Australia.
In 2000 there were 450 deaths from MND compared with 596 in 2009 – the cause of this 30% increase is mostly unknown. Over the last few years the number of people in Australia for whom the underlying cause of death is MND has remained fairly stable. In 2007 – 595 persons, 2008 – 611 persons and 2009 – 596 persons. Source: Australian Bureau of Statistics, Causes of Death
- Each day at least one person dies from MND and another is diagnosed
- 1400 people are living with MND in Australia at any given time
- 1124 people were receiving services from MND Associations across all states as at 30 June 2011
- 2803 items of equipment were loaned by MND Associations across all states in 2010/11
- Over 4000 people attended MND information or education sessions across all states in 2010/11
- $1.4 million allocated for research, through the MND Australia research arm MNDRIA in 2011
Care and Research
For every person diagnosed with MND it is estimated that a further 14 members of their family and their friends will live with the effect of MND forever. Due to the rapid progression of MND and the spiralling series of losses MND has a significant impact on the physical and emotional well being of the carer.
MND carers are a specific client group with specific needs related to training and support from diagnosis and through bereavement. Health professionals and community care providers, who may have only limited knowledge of MND, also have special needs related to information, education and support.
Until a cure or an effective treatment for MND is discovered care and research must go hand in hand.
Care based on the needs of people living with MND and their families no matter where they live in Australia or their age.
Research, which is adequately funded and supported, to give people living with MND today hope that a cure will one day be found.
The Motor Neurone Disease Research Institute of Australia (MNDRIA) is the research arm of MND Australia.
MNDRIA was established in 1984 as a national organisation promoting medical and scientific research into MND. MNDRIA has been driven forward by the vision to understand the causes, find effective treatments and discover cures for MND, and the goal to provide a minimum of $1,000,000 each year for MND research proposals.
The aims of the Motor Neurone Disease Research Institute of Australia are:
- 1) To promote medical and scientific research into MND.
- 2) To determine the relative merits of research proposals for the study of MND for the receipt of research grants.
- 3) To administer research grants for the study of MND.
- 4) To facilitate the exchange of information about MND.
- 5) To affiliate with other bodies, either national or international, to advance the cause of research into MND.
- 6) To raise funds to support research into MND.
- 7) To be an Approved Research Institute by meeting the conditions of Income Tax Assessment Act.
The Motor Neurone Disease Research Institute of Australia was previously known as the A.L.S. Research Institute and the A.L.S.-Motor Neurone Disease research Institute Incorporated.