BLOG: Ice Buckets Heat Up ALS Awareness

(WIBW) - One of the most fun viral trends in a while has people dousing themselves in freezing-cold water. While it's been cool to see everyone from Jordy Nelson to Justin Timberlake to our Kansas Highway Patrol troopers getting soaked, let's not forget that the reason for all of this is to fight a disease that is 100 percent fatal.

You've likely seen the Ice Bucket Challenge filling your Twitter and Facebook feeds and making the rounds of late night and morning television for the past couple weeks. People are challenged to dump a bucket of ice water over their head. If they do not accept the challenge within 24 hours, they must make a donation toward ALS research. It's obvious a lot of people are taking the challenge, which makes one wonder, "If everyone is taking the challenge, how are they raising any money?"

Fortunately, it appears people are giving AND getting wet. According to the ALS Association, between July 29 and August 12, the organization and its 38 chapters received $4 million in donations compared to $1.12 million during the same time period last year. The money represents more than 70,000 new donors.

"We have never seen anything like this in the history of the disease,” Barbara Newhouse, President and CEO of the ALSA stated in a news release posted on the group's web site. “While the monetary donations are absolutely incredible, the visibility that this disease is getting as a result of the challenge is truly invaluable. People who have never before heard of ALS are now engaged in the fight to find treatments and a cure for ALS."

ALS stand for amyotrophic lateral sclerosis, also known as Lou Gehrig’s Disease. It is a progressive neuromuscular condition. What might begin as a tingling or twitch gradually leads to losing function of every muscle in the body, including those used to walk, speak and, eventually, breath. There is only one approved drug to treat ALS and even it is only shown to extend a person's life two to three months. The disease is 100 percent fatal, usually within three to five years.

Since ALS is a neuromuscular disease, I became familiar with it and several patients fighting it through the Muscular Dystrophy Association. It is heartbreaking. The first year I met Mark, he walked into our MDA Telethon location, newly diagnosed. A year later, he was having trouble walking, but thrilled to share he and his wife were expecting a child. One more year later and Mark was using a wheelchair around the clock, unable to wrap his arms around his little girl, but watching her with clear, sparkling eyes, obviously filled with pride and joy. A year after that, we were meeting the family for a memorial tribute in the months after his death. A few years later, I met John, as he and his family were learning how to adjust their home to accommodate his new wheelchair. A year later, he, too, was gone.

This is the cruel reality of the disease. But the ALSA estimates only half of people are knowledgeable about the disease. In order to get people to care enough to give to a cause, they first must know what the cause is. Money cannot buy the kind of awareness which the Ice Bucket Challenge has brought for ALS.

Still, next time you chuckle at someone getting a bucket of ice water dumped on them - or if you are challenged to do so yourself - consider giving if you can. You can do so through www.alsa.org or through Augie's Quest at www.mda.org. If you cannot afford to give money, you can give your voice and spread the message of the vital need to find a cure. People with ALS cannot afford to wait.


WIBW's Drew Switzer and Collin Myers are among those who've taken the #IceBucketChallenge. You can see the videos on their respective Facebook pages.

Melissa Brunner anchors 13 News at 5, 6 and 10 and does the station's weekly health feature. For 16 years, she co-hosted the local MDA Telethon segments on WIBW-TV.


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