MND Week is celebrated nationally in the first full week of May each year. During the week MND Associations work together to raise awareness of MND to realise our vision of a world free from MND. It is also a time to acknowledge the MND community, especially people living with MND, and to remember those who have died.
Have you been personally touched by motor neurone disease? Do you have a story that you’re eager to share?
During MND Week we invite you to help raise awareness about MND by telling your story. We’re interested in stories from all angles – from the frustration and sadness of living with MND to accounts that inspire and capture the spirit of living.
Together with the state MND associations we’ll be working hard to promote stories for TV, radio and newspaper. We are also interested in shorter stories, images, snippets and words of inspiration that are suitable for our new website and social media.
How to share your story
Last year the MND community joined other Australians affected by disabilities to tell parliamentarians that we need a National Disability Insurance Scheme (NDIS). Thanks to people power, parliamentarians listened and the NDIS is now a reality.
This year we’re turning our attention to the 50% of people with MND who are diagnosed when they are over the pension age of 65. Changes to the legislation state that the NDIS will complement the aged care system to ensure a cohesive system that gives people with disability, older people, their families and carers the full range of supports they need when they need them. It is of critical importance to people living with MND how the term ‘complement’ will operate in action.
You might also like to get involved in talking about MND throughout the year to your local media or community groups. Register to be a media contact and read our Background Information Fact Sheet to assist you with facts and figures about MND.
The success of MND Week relies on raising awareness through all avenues in the media. If you would like to write a story on MND or speak to someone about the disease, please contact firstname.lastname@example.org. Our Background Information Fact Sheet might also be useful to provide a snapshot about MND.
MND community events such as Walk to D'Feet MND and Drink Tea for MND may be held at any time of the year, but many state MND Associations will host events to coincide with MND Week. View the upcoming event list or contact your state organisation for more information (and to organise an event near you!).
Read some of the media stories published and radio interviews conducted during MND Week 2012.