It's a disease that affects over 350,000 of the world's population.
The once little known disease, Motor Neurone Disease otherwise known as A-L-S, has gained increasing awareness through a successful social media campaign championed by world famous athletes, politicians and celebrities.
Advocacy groups in Australia say there is still much to be learned about what causes the disease and if a cure is to be found.
Olga Kleopva reports.
60,000 Australians joined celebrities including Microsoft founder Bill Gates and Sesame Street character, Kermit the Frog in the ice bucket challenge.
The social media campaign saw people around the world pour ice-cold water over themselves to simulate the feeling of a person's body shutting down - losing the ability to swallow and breathe, but leaving their mind intact.
National Executive Director of M-N-D Australia, Carol Birks says the social media challenge, which began in the U-S by two M-N-D patients, soon went global.
"In Australia, over 60,000 people got involved in donating. Many more probably got involved in tipping buckets of water of their head". We raised about three-million dollars in just a month really."
Donations from the tens of thousands of Australians who participated in the ice bucket challenge have funded grants distributed across 16 research centres around Australia.
Researchers have been working on identifying what causes the disease.
Dr Kelly Williams in Macquarie University, has studied the genomes of the disease for over eight years to examine the process of how it appears in two forms: hereditary and sporadic.
She says M-N-D gene studies are one of the largest genetic studies of any disease. The global research involves over a dozen countries including 15,000 patients.
"We use the genetic studies not only in diagnosis, but also to identify potential modifiers of the disease. Why some people have long progressing diseases such as Stephen Hawking or people that have very rapidly progressive diseases".
Dr Williams says big steps have been made in improving the diagnosis of the disease.
"Generally it would take longer than a year from symptom onsets for doctors to diagnose MND basically through watching the progression of the disease in the hereditary form of the disease we now can do a genetic diagnoses in two thirds of those within two months".
M-N-D South Australia regional advisor and licensed nurse Jerry Packer works with M-N-D patients.
He provides support and equipment such as electric wheelchairs, toilet razors, electric beds and iPads.
Mr Packer says the disease can manifest itself in different ways, making it difficult to treat.
"It's a very difficult disease to treat. They don't actually have any effective medical treatment for dealing with Motor Neuron Disease. The varying symptoms that you can get, actually makes looking after someone with MND very difficult. Every single diagnosis presents itself slightly differently and the progression of every single diagnosis progresses at a different rate as well".
It was the very progression rate that shocked Liberal M-P Alex Hawke when the disease took away his close family friend.
He says the impact of the disease is devastating for loved ones.
"[In a] very short period of time that it took to afflict her and to end her life, you know, that really opened my eyes to what this is about and the serious nature of this disease. Just spend as much time with them as possible. It sounds obvious but it certainly stunned me how fast it was. The average life expectancy is 27 months, in my case, the person I was quite close to, moved a lot faster than that. It really shocked the entire family but also all of her friends like myself. You know be, just be there as quickly as possible".
Almost 2000 people in Australia, or 350,000 people worldwide, have been diagnosed with amyotrophic lateral sclerosis or its more well-known name, Motor Neurone Disease.
The terminal illness - although classified as rare - claims nearly 800 hundred lives in Australia each year, which means two people die from M-N-D every day.
Carol Birks says this year's theme for the Global Day 'without borders' is hoping to improve the situation of M-N-D patients.
"The 21st June is a solstice, so a turning point. So it's sort of our hope around the world that the 21st of June, one year, will mark the turning point for this devastating disease. Every organisation around the world does different types of activities on global day to mark the day. And this year our theme is ALS-MND without borders. Our aim is to demonstrate how we work together here in Australia and also with our friends and families overseas."
Every year, Alex Hawke hosts a parliamentary morning tea to raise awareness of what it is like living with the disease - and to highlight advances in research.
He says there is much more work to be done in fighting the disease.
"One of things that we do each year is to raise awareness inside the parliament with the government that most people living with Motor Neurone Disease have a lot of needs. Australia funds some of the best Motor Neurone Disease researchers that we have. And yes, the government has to do more in this space."
