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Debilitating Disease Gets Windfall Support through Social Media

Debilitating Disease Gets Windfall Support Through Social Media
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Debilitating Disease Gets Windfall Support Through Social Media

A social media stunt sweeping the United States is drawing attention and money to combat the deadly neurological disease, Amyotrophic Lateral Sclerosis, or ALS. In the U.S. alone, there are roughly 15 new cases of ALS diagnosed each day and the disease is well-known for claiming the life of famed American baseball player, Lou Gehrig, nearly 80 years ago.

To do the Ice Bucket Challenge, one first challenges others to follow suit and the dump ice water on your head. The stunt raises money to research the debilitating disease, Amytrophic Lateral Sclerosis.

“Right now, we are running -- countrywide with both our chapters and the national organization -- at about 15.6 million dollars,” said Barbara Newhouse, president of the ALS Association.

With help from this viral video campaign, the association has raised millions in just a few weeks, which means it can fund more research and help more families affected by the disease.

“My father was diagnosed with Lou Gehrig's last November. The disease immediately started ripping through his system at a very fast pace where his body deteriorated very quickly, and on April 27th, he passed away,” said Matt Lewis, the son of an ALS victim.

A few months later, the ice bucket campaign took off. His friends challenged him, but Lewis wasn’t sure.

“I remember the last couple weeks thinking... I wasn't quite sure how I would feel if I was nominated. Three of my friends nominated me. I just thought this would be a great time to advertise everything,” said Lewis.

So he took the Ice Bucket Challenge, and in the first four hours after he posted, Matt's video had raised more than two thousand dollars.

Newhouse said social media have changed the way non-profits do business.

"What we've seen with the Ice Bucket Challenge... it's probably a game-changer for all of us in the fundraising world,” said Newhouse.

Nikki Usher, an assistant professor at George Washington University, agrees.

“If you want to be a player in the fundraising arena and to reach people that you haven't been able to reach before, you have to reach people who you're not immediately going to be connected to. And one of the ways you do that is through social media,” said Usher.

Newhouse said the challenge now is to properly distribute the millions of dollars raised so far. That gives hope to people like Matt Lewis.

“[I’m a] big fan of what everyone's been doing with that. It's raised a ton of awareness and a ton of money, and hopefully, that will keep staying strong going forward,” said Lewis.

The videos are everywhere, and they feature celebrities calling out everyone from their friends to President Barack Obama. While some videos are outright failures, for most, it's a fun way to raise awareness about a disease. But for some people it means there's hope for the future, and for a cure.

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    Arash Arabasadi

    Arash Arabasadi is an award-winning multimedia journalist with a decade of experience shooting, producing, writing and editing. He has reported from conflicts in Iraq, Egypt, the Persian Gulf and Ukraine, as well as domestically in Ferguson, Missouri, and Baltimore, Maryland. Arash has also been a guest lecturer at Howard University, Hampton University, Georgetown University, and his alma mater, the University of North Carolina at Chapel Hill. He lives in Washington, D.C., with his wife Ashley and their two dogs.