It is a disease that slowly kills you - no cure, no bright future, no hope.

An estimated 1900 people have MND in Australia. Each have an estimated life expectancy of 27 months. But it is a disease no-one wants to talk about, so patients often suffer in silence.

Now the Ice Bucket Challenge - a charity and global social media phenomenon - aims to change that. 

Everyone from pop star Justin Bieber to former US president George W. Bush and Microsoft founder Bill Gates has drenched themselves in icy water to raise awareness for the disease.

As of Thursday, the ALS Association said it had collected $US41.5 million in donations from July 29 to August 21 compared to $US2.1 million in the same period last year.

In Australia, about $50,000 had been donated so far. So the figures are good and people are starting to talk about something that is so hard and heartbreaking to discuss. 

But as Bendigo businesses and high-profile locals jumped on board and my social media feed was clogged, I became skeptical. 

I thought the message had been lost.

Why icy water anyway? Are people starting to join the fad without actually caring about the disease? And so many people are participating without actually donating - so what's the point?

That was until I watched Anthony Carbajal's video. His mother and grandmother have the disease - and he has just been diagnosed.

In the video, he takes part in the challenge - but unlike so many of the ice bucket videos circling the internet, his message is clear.

He explains that he’s beginning to lose control of his hands and is having trouble turning on his car and buttoning his shirt. 

“Eventually I won’t be able to walk, talk and breathe on my own,” he says.

He understands people are frustrated by all the ice bucket videos online. But - it's worthwhile.

"This is the first successful advocacy we’ve ever had…every single challenge lifts my spirits, lifts every single person (with the disease's) spirits," Anthony said.

"We’re so, so grateful.”