Monday, August 18, 2014

Accept the #IceBucketChallenge and don’t be such a cynic

I’ll admit I was skeptical at first; a few weeks ago when my former high school classmates started taking the #ALSIceBucketChallenge and posting the videos on Facebook I thought, “how does this help ALS?” I was being cynical, assuming most people were doing the challenge and posting it on social media because it was “cool” (no pun intended) but weren't actually donating.

I was quickly proven wrong, and gladly admit it. The craze spread - from the North Shore of Massachusetts to Hollywood and beyond. Because of a bunch of people dumping buckets of ice water on their heads,The ALS Association has received $15.6 million in donations as of Monday, August 18, compared to $1.8 million during the same time period last year (July 29 to August 18). These donations have come from existing donors and 307,598 new donors to The Association.

Unfortunately, there are still those who are cynical. There is debate over the actual “rules” of the challenge, but the quick rundown—for those of you living in a box—is that someone challenges you to dump a bucket of ice water over your head and you have 24 hours to accept or donate $100 to ALS. Some are going by the rules that, if you accept, you donate at least $10, dump the ice water over your head, and challenge three friends. But there are many accepting the challenge and pouring ice water over their head in lieu of a donation, which has let some to call the challenge “slacktivism.”

But before the Ice Bucket Challenge went viral, when is the last time you heard about ALS? Or read about it? When was the last time ALS was at the forefront of our culture? The answer is July 4, 1939, when Lou Gehrig gave his famous “Luckiest Man on the Face of the Earth” speech. After this, ALS was dubbed “Lou Gehrig's Disease.” But, sadly, very little has changed since 1939— there is still no cure for ALS so the prognosis is still 100% fatal.

If you don’t know anyone with ALS, it is an awful, awful disease. About 5,600 people are diagnosed with ALS each year in the United States. On average, it is diagnosed between the ages of 40-70, and the life expectancy for someone once diagnosed is 2-5 years. So when former Boston College baseball captain Pete Frates was diagnosed at 27 years old, he was told he would live to 32 if he was “lucky.” But during those years, he would lose the ability to walk, talk, breathe on his own and, eventually, move anything except his eyes.

But, despite the large amount of money raised, the challenge still has many skeptics, like Vice’s Arielle Pardes who wrote, “It’s like a game of Would-You-Rather involving the entire internet where, appallingly, most Americans would rather dump ice water on their head than donate to charity. There are a lot of things wrong with the Ice Bucket Challenge, but most the annoying is that it’s basically narcissism masked as altruism.” (You can read her whole column here: Dumping a Bucket of Ice on Your Head Does Not Make You a Philanthropist).

You know what I say to Parades? What a sad outlook you have. I'm sorry this challenge to support our friends and loved ones with ALS, a disease without a cure, is annoying you. More than a million people have posted #IceBucketChallenge videos, resulting in millions of dollars donated to ALS research, and you have to find the bad in it. Maybe the challenge itself is “silly” or is a stunt, mere “slactivism,” or just about showing off on social media… but who cares why some people do it? Money is being raised for a worthy cause, and people are talking about ALS! Whether you know Pete Frates or someone else with ALS, this challenge is about bringing the disease to the forefront and getting the research dollars it needs to end its fatal diagnosis. I don’t care that Kylie Jenner or Justin Bieber probably have no idea what ALS is – dumping a bucket of cold water over their heads (which, admit it, you would have liked to do for them) means something to those who have ever had a loved one with ALS. And, hopefully, all of these celebrities are donating money to ALS after they complete the challenge.

What the ice bucket challenge has done, in addition to raising more that $15 million so far, is to make people aware of this awful disease that doesn't get enough attention or enough research dollars. What started in Frates’ hometown of Beverly, Mass., has spread to the world – Oprah Winfrey, Steven Spielberg, Jennifer Lopez, Cristiano Ronaldo, the Boston Red Sox, New England Patriots, New York Jets, Jimmy Fallon, LeBron James and Justin Timberlake are just a few of the hundreds of thousands who have “accepted the ice bucket challenge.” In a billionaire triumverate, Mark Zuckerberg challenged Bill Gates, who accepted and challenged Elon Musk, who accepted … and it goes on and on.

Personally, I accepted the #ALSIceBucketChallenge on August 8, and donated through petefrates.com. My five-year-old accepted a challenge from her uncle and money was donated in her name.

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Yes, dumping a bucket of ice water of your head is silly. But what it stands for is anything but. So accept the challenge and donate — as much or as little as you want — at  http://petefrates.com/contribute.html, ALSA.org or your ALS charity of choice.

You have 24 hours!