President's report

It has been my honour and privilege to serve as President of Motor Neurone Disease (MND) Australia over the past year. It has been a year of significant development for our national association, MND Australia, and a year of great hope for people living with MND.

 

Ralph Warren, PresidentMND Australia, principally through our National Executive Director, Carol Birks, has continued to press all issues associated with motor neurone disease. Carol has been instrumental in MND Australia maintaining a public profile in support of those living with MND, and the significant and distinct requirements that MND brings to carers of loved ones living with this terrible fatal disease.

We were of course pleased to see the Federal Parliament pass the required legislation to establish a National Disability Insurance Scheme (NDIS), and trust the new Government will continue to fully support both its introduction, through launch sites, and ultimately the provision of the full services and facilities available through the NDIS. This is a vital development in attending to the care for people living with an often rapidly progressing and ultimately totally physically debilitating disease.

It remains a significant disappointment to us that the NDIS will not provide support for those living with MND, who have been diagnosed with the disease on or after attaining the age of 65 years. Unfortunately this part of the policy and legislation will deny the significant care benefits to, on current statistics, approximately half of the people living with MND. MND Australia will continue to strongly advocate for the expansion of the NDIS to cover these disenfranchised people, as we maintain that the Federal Government’s provision of its various aged care policies will not meet the specific needs of many people within this age group who contract MND.

Having noted the significant gap in the provision of proposed services through the NDIS, I yet still remain in awe of the carers of people living with MND and the significant love and sacrifice we see daily coming from these wonderful people. MND Australia recognises the special needs of MND carers and will continue to advocate for recognition of these efforts, both through support from the NDIS and otherwise, for it is through the carers that much of the dignity and hope of people living with MND is given voice.

As noted by our Executive Officer Research, Janet Nash, in her report, the activities of our research arm, the Motor Neurone Disease Research Institute of Australia (MNDRIA), continue to support in a significant way our Australian researchers seeking a cause and a cure for MND. This year MNDRIA was able to provide well in excess of $2 million for research grants to many of our dedicated Australian scientists. It is apparent from recent developments, that Australian scientists are at the cutting edge of innovative research and techniques which appear to be getting closer to finding a cause of how MND is initiated and how the disease progresses. It is only through research that this terrible disease will be beaten and the reason for this association, and our member state associations existence, will fade into history.

Throughout the year Carol Birks, and her dedicated staff, have continued to provide a service to our state associations where needed and also to champion the cause of MND at a national level. As further noted in Carol’s report, MND Australia, with significant assistance and co-operation from MND New South Wales, has been able to co-ordinate with MND Queensland the further development of that state’s regional advisor service, which will hopefully expand to provide support and advice for those living with MND throughout that vast state.

In collaboration with MND Queensland, MND Australia has developed a new multi-site website which will enable other state associations to join in and be part of a common website. If that decision is made by the various state associations it will streamline and greatly improve our contact with, and assistance to, the MND community throughout Australia.

In conjunction with her role as National Executive Director of MND Australia, Carol has continued in her position on the Board of the International Alliance of ALS/MND Associations. This firsthand involvement is for the mutual benefit of the various MND associations in Australia and the MND family worldwide. I would like to publicly thank Carol for her dedication and efforts on behalf of Australians living with MND and assure all that MND Australia will maintain an active and vital influence at the national level to continue the fight against motor neurone disease and to continue advocacy for and on behalf of our member associations and their members living with MND.

Ralph S Warren
President
MND Australia

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