ice-bucket-challenge-boston-by-Elise_Amendola

Who knows why videos go viral — Gangnam style and twerking fads, they spread like wildfire. But, now a worthwhile charitable campaign is tearing up social media, raising more than $42 million in the process.

The recent deluge of videos featuring people dumping ice water on themselves may seem dumb at first, but to those living with amyotrophic lateral sclerosis (ALS), or Lou Gehrig’s Disease, the Ice Bucket Challenge is a splash of hope in an otherwise hopeless situation.

Anthony Carbajal has lived his entire life in fear of ALS, which runs in his family. It took the life of his grandmother and robbed his mother of the ability to walk or even sit up in bed. Five months ago, his worst nightmare became reality when he was diagnosed with the disease at 26 years old. He posted an emotional and powerful You Tube video in response to the #icebucketchallenge.

“ALS is so (bleeping) scary,” he said through tears. “Eventually I won’t be able to walk, talk or breathe on my own.”

The debilitating and rapidly progressive fatal neurological disease causes the brain to stop sending the messages that control muscle function. According to the National Institute of Neurological Disorders and Stroke, the muscles in the face, arms, legs and body gradually weaken and waste away. Eventually, the individual loses the strength and ability to move, but their mind and senses remain in tact. Control of eye muscles is one of the only ways for patients to communicate. Despite billions of dollars being poured into clinical trials, there is only one drug approved by the U.S. Food and Drug Administration, called riluzole, which has been shown to slow the progression of the disease, but only extend survival for a few months.

Aside from a few notable cases like NFL player Steve Gleason, there has been little celebrity attention on the disease since 1939 when the New York Yankees baseball star Lou Gehrig gave a heartwarming speech at Yankee Stadium saying he was the “luckiest man on the face of the Earth.” But, now, in the age of viral videos, “Lou Gehrig’s Disease” is making up for lost time — 75 years worth of silence.

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Jimmy Fallon with his band, The Roots, on the Tonight Show

In three short weeks the Ice Bucket Challenge has made a bucket of frigid water the global symbol of ALS immobility. Started by Pete Frates, a former baseball player for Boston College who has lived with ALS since 2012, and fellow ALS patient Pat Quinn, the act is a metaphor for the disease, which can rob patients of their ability to sense hot or cold.

The videos tearing up social media under the tag #icebucketchallenge show everyday people –and celebrities — throwing a bucket of ice water over their heads. Then, they “nominate” three other people asking them to do the same, otherwise, donate $100 to any ALS charity, or ideally do both within 24 hours. Oprah Winfrey, LeBron James and George W. Bush were a few of the celebrities, athletes and politicians who doused themselves and made it a viral phenomenon (see those videos below).

It is Simple, Viral and Social, but to the ALS Community, it is a Miracle

“You have no idea how every single challenge makes me feel; lifts my spirits, lifts every single ALS patients’ spirits. You’re really, truly making a difference and we’re so, so, so grateful,” said Carbajal in his video at the bottom.

As of Thursday, August 21, the ALS Association had received $41.8 million in donations. Three-quarters of a million new supporters donated cash for the cause. They nominated their friends to do the same.

“To all who participated, I say thanks. I’m so honored and humbled,” Frates communicated via a computerized device due to speech difficulty associated with the progression of ALS.

With the sudden abundance of contributions, the ALS Association plans to fund groundbreaking research in laboratories, provide vital support and care services through their nationwide network. They hope to empower ALS advocates to encourage their elected officials to support government programs for research, because after summer is over – when it no longer feels refreshing to dump ice water on yourself and the dollars stop pouring in – the ALS community will still be in need of hope and in search of a cure.

You can donate here, without getting your hair wet, at ALSA or TeamGleason. (If doing the challenge, please use the hashtags #icebucketchallenge, #alsicebucketchallenge, #strikeoutals #kissmyals or #TeamGleason)

 

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