Could you imagine not being able to talk to the people you love, or cuddle them? Your children, partner, parents, friends?
Well, next Thursday - October 28 - Australians have been asked to take part in the Shut Up! Challenge for Motor Neurone Disease (MND).
Challenge participants are asked to stop speaking for six or 12 hours, and find other ways to communicate. Workplaces can also adopt Shut Up! for MND during business hours.
MND is an incurable condition in which the nerve cells controlling the muscles that enable us to move, speak, swallow and breathe, fail to work.
One in 10,000 Australians will be diagnosed with the debilitating disease in their lifetime and the average life expectancy from diagnosis is just two years.
In fact, around two people per day die from this horrible disease, while two people a day are diagnosed.
Recent figures show there are around 2000 people living with MND in Australia, and, for reasons unknown, that figure is increasing every year.
Of those, around 60% were male and 40% were female. Almost 60% of those people were younger than 65 years.
In 2001 592 Australians died from MND, compared to 791 in 2016 (latest figures) - a jump of 34% over 15 years.
It’s been a year of hope since a major breakthrough was made in the hunt for a cure for MND - a potential new treatment was developed that could slow progression of the disease and add an extra 10 years of life for people diagnosed.
Almost 12 months ago, Australian researchers found that by blocking an immune sensor called STING, they could dramatically prevent inflammation from MND patient cells.
Researchers said development of the potential treatment was still in its early stages but they hoped the promising results from animal studies could be transferred to patients during clinical trials.
It was hoped the breakthrough could also help those with other neurodegenerative disorders, such as Parkinson’s disease and dementia.
Research and clinical trials into the disease is always ongoing in Australia, and across the globe.
According to MND Australia - 2021-22 Pre-Budget Submissions, while there are currently no effective treatments for MND, there are a range of measures that will both improve the quality of life of people living with MND and reduce the cost of this condition on the community.
Timely and expert diagnosis, early and evidence-based intervention from specialist MND multidisciplinary teams, local services and MND associations, access to assistive technology, specialist palliative care, specialist planning and assessment and coordination of care, including a proactive framework for decision-making, play vital roles in maintaining quality of life, social engagement and independence.
Motor Neurone Disease Research Australia is the research arm of MND Australia and was awarded almost $3 million for new MND research projects at the start of the year.
In the meantime, we can all do our part in raising funds into research for a cure for this debilitating disease.
Register yourself, your family or your business to take part in the Shut Up! Challenge for MND today.