Global Day 2015 morning tea at Parliament House

To mark ALS/MND Global Day 2015, MND Australia held a morning tea at Parliament House in Canberra, hosted by Alex Hawke MP, to promote MND care and research and advocate for the rights of people living with MND.  
In the spirit of this year’s Global Day campaign – ALS/MND Without Borders – members of both sides of politics joined 50 people from the MND community including those living with MND, their loved ones, peak bodies and health and community care professionals.  We thank Alex Hawke MP for once again hosting the morning tea and continuing to passionately advocate for people living with MND.
 
Prime Minister Tony Abbott is welcome by Tim Hynes and Carol Birks to the MND Global Day morning teaWe were privileged to be joined by Prime Minister Tony Abbott whose opening speech highlighted his personal connection with MND and the Government’s ongoing commitment to MND research.  The Prime Minister took time to meet members of the MND community and showed his support of people living with MND by signing the MND Charter.
 
We are grateful to Warren Ensch MP, John Alexander MP, Senator Nova Peris, Stephen Jones MP, Angus Taylor MP, Nola Marino MP and the advisor to Senator Mitch Fifield for joining us.
 
Guest speaker Pamela Harvey shared her story of living with MND and described the 
invaluable support provided by MND NSW and the ACT MND Clinic. 
Alex Hawke MP, Jameela Walker and PM Tony Abbott
She also highlighted the vital need for a fair care system for all Australians living with MND, regardless of their age.
 
Carol Birks, National Executive Director of MND Australia spoke of how the 
Ice Bucket Challenge donations from 60,000 Australians are being spent on MND care and research. She also highlighted that until an effective treatment or cure is found there will continue to be an urgent need to raise awareness and funds for care and research.

Following on, Janet Nash, Executive Director of the MND Research Institute of Australia detailed the $1.05 million MND Australia Ice Bucket Challenge Grant allocation process and introduced the grant recipient, Professor Naomi Wray from the University of Queensland.

Naomi then presented an overview of the Sporadic ALS Australian Systems Genomics Consortium (SALSA-SGC) that will be funded by the MND Australia Ice Bucket Challenge Grant. The Consortium comprises sixteen researchers from nine MND centres across Australia who will work together with key international collaborators to build an integrated infrastructure for the collection and analyses of biological samples and clinical data. 

The morning tea was concluded with the President of MND Australia, David Ali presenting to Alex Hawke the names of over 600 new supporters of the MND Charter, bringing the total number of supporters to 2700.

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