We'd like to thank everyone who attended our event at Parliament House in Canberra today. Representatives from the MND community, CEOs from the national network of MND Associations in Australia, MND researchers and clinicians, senior public servants, and others joined Members of Parliament and Senators to formally launch the Parliamentary Friends of MND Group.
This group will provide a non-partisan forum for Parliamentarians to interact with MND Australia, and health professionals and the wider MND community on matters relating to strongly supporting advancing care, advocacy, and vital research to find better treatments and eventually a cure for this disease. Our event host, the Hon Alex Hawke MP, chairs the Parliamentary Friends, together with Senator the Hon Carol Brown.
At the event we also heard personal and impassioned stories from people impacted by MND – Jason Smith and his interactions with the NDIS, Tania Piper who cares for her mother Roslyn who has MND and their experiences with the aged care system, and Ron Lalli-Cafini who appeared in MND Australia’s Living with MND video which was also launched at the event.
We also belatedly recognised MND Global Day, as Parliament was not sitting on 21 June, and acknowledged the death last month of music icon and MND Australia’s Patron Judith Durham AO.
This important MND Australia advocacy opportunity enabled a greater voice for Australians with MND. We want to ensure and empower people with MND and their carers and families to live better, for longer. We want to ensure their fundamental rights are acknowledged and protected and that there is equity of access irrespective of age and geography.