OPINION: Don't you try to hose down the Ice Bucket Challenge
DEAR WIN TV newsreader, my grandma is dying.
Her body is being ravaged by a disease that is not just stealing her vitality but also her dignity.
She can no longer eat, bathe or go to the toilet by herself.
She is cared for by my grandfather who has given up his job as carpenter to give her the 24-hour day care she needs.
My grandma has Motor Neurone Disease or Amyotrophic Lateral Sclerosis (ALS) or Lou Gehrig's disease as it is known if you live outside of Australia.
Up until recently, a lot of people were unable to explain what the disease was or how it affects the body.
It has no ambassadors like Kylie Minogue, Lance Armstrong, Sharon Osborne, Sheryl Crow or Angelina Jolie to create awareness in the international media.
There are no cute pictures of fluffy puppies to roll out for media-friendly happy snaps on charity fundraising days.
Motor Neurone Disease has no survivors, no happy endings, no miracle tales of defeat.
There is no cure, no effective treatment.
It is an ugly, f__ker of a disease.
Its victims eventually lose the capacity to speak, breathe, swallow and move.
Unfortunately, there is no as you Mr WIN Sunshine Coast newsreader put it "mild discomfort about it."
People with MND spend their final months lying in bed or in a chair with the last functioning organ - the brain - making sure they are aware of the pain.
Over the weekend I watched your Facebook video shutting down the ice bucket challenge because I wanted to see if you would use your privileged position in the media to deliver an educated message to the masses.
While I concede you never set out to insult anyone with your comments, your sunglasses-wearing, arm-folding response at the end of the unedited clip validated what I was thinking…but I won't throw stones here.
So instead of flinging insults over your naiveté and insensitivity, lets just deal with the facts.
Each charity you listed - The Red Cross, Cancer Council, Water Charity and RSPCA - gets it time to shine in the spotlight.
Here is just a snapshot of their media coverage:
Charities raising funds and awareness to supply drinking water
Here is some of the love spread around:
Money being raised from the ice bucket challenge is amazing and more importantly: vital.
It has generated more than $55 million in about a month for ALS in the US, and here, countless people are donating to local organisation MND Australia.
Motor Neurone Disease has not had any significant drug approval in the 70 some years since Lou Gehrig gave his "Luckiest Man On the Face of the Earth" speech.
Up until recently MND or ALS did not generally get too much media attention.
As 26-year-old Anthony Carbajal - whose grandmother, mother and he all have the disease - puts it in his response to the ice bucket haters…
"ALS is so so f___ing scary you have no idea.
"That's probably why nobody talks about it, because it's so challenging to watch, it's so challenging to see, to talk about.
"Nobody wants to see a depressing person that's dying and has two to five years to live. They don't want to talk about it, they don't want their day ruined."
The ice bucket challenge has got people across the globe talking and that is a good thing.
If you are tired of watching celebrities pour water on their head then remember this: The ice bucket challenge is a trend.
It has done what it was set out to do… create awareness and money. Unfortunately this desperately needed attention will fade.
To quote Anthony again:
"I promise your newsfeed will go back to cat videos and Let It Go covers, but right now, the ALS community has the main spotlight, and for once in my entire life, I've seen it in the forefront."
Here is my challenge to you Mr WIN Sunshine Coast news reader - spend an afternoon with someone who has Motor Neurone Disease, then let me know if you still feel the same way.
PS: Please donate here. I gave $50 this morning.
Much peace and love.
Bianca Clare is an award-winning health reporter, and News Director for the Sunshine Coast Daily.