As the first year of my term as MND Australia’s President draws to an end, I look back with pride at our accomplishments in making a difference to the lives of all people impacted by motor neurone disease (MND) in Australia.
During 2013–2014 MND Australia continued to deliver on our milestones and targets in our Strategic Plan 2011–2014. We supported our members – the state MND associations – through various challenges, for example the impacts of the implementation of the National Disability Insurance Scheme, and facilitating relationships between MND Queensland and MND and Me. We also worked steadily with the state MND associations to ensure that policy makers understand the complex, progressive needs of people living with MND. We engaged in policy matters that affect people with MND, focusing on the National Disability Insurance Scheme and Aged Care reforms as well as palliative care. We were heartened by over 2000 people who signed the five rights petition to champion the needs and rights of people living with MND. Together we will continue to advocate and influence government and others ensuring that MND remains on the agenda of policy makers and that a fair care system is achieved for all Australians living with MND, regardless of age or postcode.
We continued to increase community understanding and awareness of MND. The redesign and launch of MND Australia’s desktop and mobile websites makes finding trusted information about MND easier from any location. When combined with our expanded social media activities and new bi-monthly enewsletter, MND Australia’s complement of communication channels are providing the latest information to empower people with MND to make decisions to help them live better for longer.
Raising awareness is at the crux of building a financially sustainable organisation that can best fulfill its mission. During 2014 MND Australia coordinated multimedia awareness campaigns to coincide with MND Week and ALS/MND Global Day. We were also overwhelmed by the recent global social media phenomenon of the Ice Bucket Challenge. As we raise the awareness of MND among our stakeholders and the general public, we are better positioned with the state MND associations to further improve the outcomes of people living with MND.
The MND Research Institute of Australia (MNDRIA) continues to support the advancement on MND research as researchers work towards our vision of a world without MND. The generous support from the state MND associations and donors has affirmed MNDRIA’s position as the driving force for MND research in Australia. A record $2.17 million was allocated to the best MND researchers in Australia for projects commencing in 2014. MNDRIA enables MND researchers to break new ground while providing people currently living with MND with hope for improved quality of life and prolonged survival.
Our accomplishment would not be possible without the commitment of our Board of Directors, the hard work of our staff and the generosity of our supporters. I commend the leadership of National Executive Director of MND Australia, Carol Birks and I take this opportunity to congratulate Carol on her appointment as Chairwoman of the International Alliance of ALS/MND Associations.
I particularly want to acknowledge and thank Ralph Warren whose term as President of MND Australia came to an end in November 2013. During his six years as President, Ralph led the Board with distinction and integrity, and I believe he has left MND Australia in a much better shape than when he first joined it.
As we forge ahead we are spurred to achieve greater successes by the courage, tenacity and spirit of the MND community. MND Australia’s strategy and operations will remain intently focused on what matters: improving the lives of all Australians impacted by MND.
David Ali
President of MND Australia
During 2013–14 MND Australia played an authoritative role in connecting with key decision-makers, leading discussions and driving campaigns to improve the lives of all people impacted by motor neurone disease (MND) in Australia.
Together with our members – the state MND associations – we continued to champion the rights of people living with MND by influencing the development of the National Disability Insurance Scheme (NDIS) and the aged care reforms. The launch of NDIS trial sites in Hunter and Barwon in July 2013 has given us an insight into the consequence of the NDIS to people living with MND, and enabled us to shape policy development at the grassroots and federal levels.
It remains the case that people diagnosed with MND when over the pension age will not be eligible to access the NDIS. Reforms to the aged care system will improve the support available; however, continued advocacy is vital. Our ongoing discussions with National Disability Insurance Agency and aged care decision-makers and the Assistant Minister for Social Services, Senator Mitch Fifield will ensure that people living with MND are not forgotten as the NDIS and aged care reforms progress.
Optimal and timely palliative and end of life care for people living with progressive neurological conditions are essential to their quality of life. MND Australia has worked closely with the Neurological Alliance Australia and Palliative Care Australia to develop a joint Position Statement on Palliative Care and Neurological Conditions, which will be released in the second half of 2014. Read more
The provision of trusted information to people impacted by MND is central to enabling them to make well-informed decisions. In September 2013 MND Australia launched a new integrated care and research website. A smart phone accessible site was developed and launched in May 2014 and work is now in progress to transfer the MNDcare website to this CMS and mobile platform. Both these initiatives were kindly sponsored by the Commonwealth Bank Enterprise Services team “Wake up After Winter” campaign. Read more
Support from many loyal and committed MND donors and the wider community for research continues to grow and we were once again able to allocate over $2 million for 35 new grants commencing in 2014. The number and scope of projects supported by the MND Research Institute of Australia attests its position as the driving force for MND research in Australia. Read more
We continue our international commitment through the International Alliance of ALS/MND Associations and attendance at the international meetings. At the Milan meeting I was honoured to be elected by members as the Chairwoman of the Alliance. I look forward to working with member associations from around the world in the coming three years to grow the Alliance and support its development as the international voice for people living with ALS/MND.
I thank President David Ali and the Board for their continued support and guidance and our member organisations for their valued contributions. I am proud of our achievements this year which would not have been possible without the exceptional commitment and teamwork of our small team of staff and volunteers.
We look forward to working closely with our members to develop and finalise the 2015–2018 Strategic Plan. Together we will continue to advocate for a fair and equitable care system; maintain significant funding for the best research and keep the voice of MND strong nationally and internationally.
Carol Birks
National Executive Director of MND Australia