Just one in ten people with Motor Neurone Disease (MND) will live with it for more than five years.
The public is being asked to 'Drink Tea for MND' virtually this year, as part of MND Awareness Day which takes place tomorrow.
The Irish Motor Neurone Disease Association is hosting the online event.
Spokesperson Michael Clancy, who has the degenerative disease, says it is important to raise awareness.
Mr Clancy says: "Not enough of people know about MND. Generally, it is known as the 1,000-day disease.
"So between diagnosis and demise it is between 3 and 5 years.
"If you're lucky to last that long".
There are roughly 360 people living with MND in Ireland and it usually affects people over 50 but younger people can be diagnosed as well.
The Irish Motor Neurone Disease Association said 80% of people with MND can lose their speech.