In two short weeks, a social media challenge that has hundreds of people dumping buckets of ice and water on their heads has gone viral and brought an influx of cash to the ALS Association. The "Ice Bucket Challenge," as it's been dubbed, has raised more than $1 million for ALS and spread awareness of the debilitating disease.
"The challenge is fun and people are paying attention. It’s growing by leaps and bounds and maybe we can get unfrozen from ALS," said Karen Delaney-Shideleff of Bucks County who was diagnosed three years ago.
"It’s a hard disease to live with. It’s not well known because people don’t usually live very long. There aren’t a lot of us out there."
Former Boston College baseball player Pete Frates who is living with ALS started the phenomena when he challenged himself on Facebook on July 31.
Frates wrote, "Ice water and ALS are a bad mix."
ALS is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord, leading to muscle weakness, loss of the use of arms and legs and difficulty speaking, breathing and swallowing, NBC News reported.
"Ice Bucket Challenge" participants post to their Facebook, Twitter or Instagram accounts and invite three others to do the same using the hashtag #icebucketchallenge. The 'challenged' must dump ice and water on their heads within 24 hours and challenge three additional people, encouraging donations to the ALS Association.
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President Barack Obama was challenged by Ethel Kennedy, the widow of Sen. Robert F. Kennedy. Obama declined to do the challenge, but said he'd donate to the ALS Association this week.
On a hot summer day, icy water may be refreshing, but those close to the disease say there's symbolism in the act of dumping cold water on one's head.
"It's that chilling effect of what it’s like to be frozen. Their minds work but are frozen in bodies that don’t work any more," said Tony Heyl of the ALS Greater Philadelphia Chapter.
NBC10 reporter Jillian Mele took to the Art Museum area last night to partake in the fun. She was challenged by a high school friend.
"Super fun! It was cold but refreshing and a great way to spread awareness of ALS," said Mele.
NJ Devils and Sixers CEO Scott O'Neil did the challenge yesterday and challenged Governor Chris Christie to join him.
Amyotrophic lateral sclerosis, also known as ALS, was first described in 1869 by French neurologist Jean-Martin Charcot, but it wasn't until 1939 that professional baseball player Lou Gehrig brought international attention to the disease, according to the ALS website.
"We’ve never had global awareness like this happen so quickly as summertime is usually a downtime for donations. With more funds and support we can unfreeze the secrets to ALS and find cure in the future," said Heyl.
