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National Executive Director's report

In this Annual Review we outline MND Australia’s main achievements and show the impact of our advocacy, information and awareness activities in the preceding year.

Carol Birks with MND community in MalaysiaPeople living with motor neurone disease (MND) face many challenges but accessing the right care at the right time should not be one of them. The ever-changing nature of Australia’s health, disability and aged care sectors casts uncertainty on funding for and access to services.

MND Australia, together with our member organisations, the state MND associations and in partnership with the Neurological Alliance Australia, has secured traction in our advocacy efforts during the development of the major reforms to the disability and aged care sectors. Notably, legislation now recognises people living with progressive neurological conditions under the age of 65 as an early intervention group within the National Disability Insurance Scheme (NDIS). With the support of our member organisations we will continue to work to influence policy to ensure that people diagnosed with MND when aged over 64, whose needs are not met by the aged care system, are able to access ‘top up’ funding to address their needs. Read the advocacy report.

We have continued our international commitment through the International Alliance of ALS/MND Associations and our attendance and contributions to the international meetings in Chicago. In our region we have facilitated the exchange of information and development of partnerships. I was invited to speak at the 24th Annual Scientific Meeting of the Malaysian Society of Neurosciences and took the opportunity to present an overview of the International Alliance and MND in the Australian context. During the visit I met with key practitioners, patients and volunteers all committed to the development of a MND clinic, support group and association – a positive step forward for people living with MND in Malaysia.  

The provision of up-to-date and trusted information to the MND community is at the heart of our activities. The 6th National MND Conference, Care, Advocacy and Research, hosted by MND South Australia and kindly sponsored by Biogen Idec.was attended by over 180 health professionals from across Australia.

In the last year we have focused on growing our online presence. MND Australia in partnership with MND Queensland engaged Rocksolid to develop a new multisite website. Our social media engagement has been enhanced and supporters have grown thanks in a large part to the recruitment of a Communications and Information Officer. Read the provision of information report.

Support from the community for research has almost doubled since 2012 indicative of an increase in the awareness of MND.  We allocated an incredible $2.014 million for new grants commencing in 2013 in addition to funding the inaugural Leadership Grant. Read the research report.

I thank the Board for their continued support and guidance this year, our member organisations for their contributions and our small team of staff and volunteers for their passion and commitment.

In the year ahead we will continue to work together to provide national leadership in defending the rights of all Australians with MND, maintain significant funding for the best research and keep the voice of the MND community strong in this era of great change.

Carol Birks
National Executive Director
MND Australia

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