Michael LaCouture via Crowdrise
November 03, 2014
BENEFITING: Amyotrophic Lateral Sclerosis Association
EVENT DATE: Dec 06, 2014
Ahh, the internet..... a blessing and curse over the last 2 decades. A blessing in part because of the increased reach and visibility of, well, anything you care about. A curse in that it is far easier now to share a story or picture and forget/neglect to realize what real impact might be possible. The Ice Bucket challenge is a great example - originally created as a vehicle to spark interest in a disease and build local donation support, the campaign has gone "viral" worldwide, with celebs to sports stars to global politicians all joining in the awareness effort. However - somewhere along the way, one of the pillars of the campaign was lost - donations. Before you start screaming at me, yes I know that there has been a MASSIVE uptick in donations and ALS has received new and relevant media attention. And I know many, MANY friends and families have embraced the video and the donation portions. BUT -I can find you 100 videos in about 5 minutes of families, friends, and strangers alike who have made the silly video, tried to one-up each other, and received THOUSANDS of positive responses on their videos - and not a single donation was made. We need to and can do better than that.
Why do I care? Because I was a primary caregiver for my father, who suffered with this disease, one of the most insidious and horrible things I have ever watched hit the human body in my whole life. And I have seem some SHIT - trust me. ALS has a 5 year survival rate of 13%. Let that sink in. Breast Cancer, as a comparator, which has received more publicity and public donation than any disease EVER, has an all-stage 5 yr survival rate of 89%. Why? Public awareness and MONEY. Additionally, there is no cure, no chronic maintenance, and no pharmacologic management of the disease. The current medicine prescribed to patients is argued to "possibly" increase life span by approximately 2-3 MONTHS. (Miller RG et al, The Cochrane Database of Systemic Reviews, 2012). Rounding out the bad news, there is no known consistent cause. Experts identify military service as a leading correlate, but do not know why. Possibly head trauma in sports.... possibly exposure to blue-green algae.... possibly electroshock therapy. And the only way we can try to isolate a cause, or perhaps turn the corner on prevention or maintenance - is money. Which brings me back to the Ice Bucket Challenge....
Let's change the rules.
To anyone who nominated me for said challenge, to anyone who named my father, Carle, in their heartfelt and well-intentioned video, to anyone who participated but neglected to donate, to ANYONE period - here is MY Reverse Ice Bucket Challenge to YOU - donate to this fundraiser, any donation. A dollar. 10 bucks. Whatever. Anything will help. Every penny will go to the charity. If - WHEN- we hit $5000 by DECEMBER 1st, 2014, on Dec. 6th, my 3 business partners and I will set up a temporary pool in the parking lot of our business, we will fill it with freezing cold water, we will strip down to our skivvies, and get in - and then we will have an ICE TRUCK back up and dump ice in that pool. The more we surpass the goal, the longer we stay in. Hell - if you donated and want to come shovel ice on us, the more the merrier.
And before the internet trolls start accusing me of a publicity stunt for my business, I will not mention the name of the business, and I will reveal the address when we get closer to D-Day, or ICE-Day, as it were. If you want to know more about that, feel free to message me at email@example.com.
I hope you choose to support me, to support the idea that awareness is only ONE piece of the puzzle to striking back at this terrible disease. Please bookmark this page if you're interested in keeping track of our progress as we approach the 12/1/2014 fundraising deadline. I encourage you to continue to learn more about this disease and how it affects families around the world.