Raising awareness for Motor Neurone Disease (MND) or more commonly referred to as ALS or Lou Gehrig’s disease in the States, has taken a giant leap forward over the past week with the #icebucketchallenge going viral.
I’m deeply moved and excited because I am confident that awareness is the first step towards finding a cure. As someone living with this disease, it is a personal passion of mine that one day no one would have to.
Neuroscientists have told me that they will find a cure, it’s only a matter of time and resource. In the meantime, with no prevention and no treatment, every 12 hours someone dies from the disease and every 12 hours someone else is diagnosed with it, in Australia alone.
The idea of the ice bucket challenge is pretty simple: get a bucket of ice cold water tipped over your head, nominate friends to do the same and donate to the cause. Everyone’s doing it; Oprah, Bill Gates, Mark Zuckerberg and many others in the sporting and entertainment world.
And it’s working. Twenty eight million Facebook users are discussing the challenge, while the ALS Association (ALSA.org) has received unprecedented donations, so far more than $35 million.
Here at home, Kochie, Russell Crowe, footy teams, and politicians are getting behind this social media phenomenon. Tonight, MND Australia are hosting the #icebucketchallenge world record attempt at Etihad stadium in Melbourne.
You may have heard that Neale Daniher, one of our AFL sporting heroes, revealed this week that he has MND / ALS. Sean Lee, a sports writer commenting on this said,
“It will attack his body, take away his strength, destroy his independence and kill him. Nothing is surer…
And yet Daniher maintains his sense of humour. He remains positive…he says on more than one occasion that he has been lucky. It is a typical Daniher response to hardship. “She’ll be right mate.”
Except that it won’t be right. Not this time.”
As someone battling MND, a disease that I have but that does not and will not have me, I am so encouraged by the #icebucketchallenge, throwing this disease into the realm of public awareness.
Imagine if this crazy, fun challenge was the catalyst for raising enough money to fund enough research to find the right cure for MND / ALS.
Then, like Neale, we could say “she’ll be right mate” and it really would be.