What do you really know about ALS and the #IceBucketChallenge?


This guest post was contributed by BDN Portland Bureau Chief Seth Koenig.

The ice bucket challenge has been impossible to miss if you’ve spent any time on the Internet over the past week or two. Famous actors, businessmen, politicians and athletes – as well as just about everyone else – have agreed to have buckets of ice water dumped over their heads in the name of ALS fundraising and awareness.

For the few people who still haven’t seen it, the deal is this: You either agree to donate $100 to ALS research or you agree to have a bucket of ice water dumped on your noggin. Then, if you chose the latter, you post a video of the dumping on social media and dare a couple of friends to do the same.

Naturally, it took off like wildfire, as people have been eager to take part in something hip or afraid of having their bravery called into question.

Within the past week, several staffers here at the Bangor Daily News have taken the dousing.

But as with anything trendy, it has come with detractors. At first, Facebook naysayers questioned whether the fad actually raised any money, as most people appeared to be taking the ice water option instead of the donation option.

(Videos of people writing out checks aren’t nearly as visually interesting.)

That criticism turned out to be unfounded. As the BDN and many other news organizations have pointed out in their coverage this week, the ALS Association announced that its donations shot up fourfold during the ice bucket challenge’s biggest two weeks, from July 29-Aug. 12.

The organization raised $1.12 million during that stretch last year, and more than $4 million over the period this year.

So it’s working. People are donating money – the association has counted 70,000 new donors to its cause since that July 29 date. That money is being used to seek a cure and to raise the quality of life for people stricken with ALS.

How about on the awareness side, though? Do more people know more about ALS than they did a couple of weeks ago?

Just in case, when BDN business writer Darren Fishell and I took the challenge, we decided to add a little bit of education value to our post, in an effort to contribute to the awareness raising part of the campaign.

Neither of us are experts, and reading this post won’t make you an expert, but here are some basic facts about ALS that ought to give you a foundational knowledge about this debilitating disease.

First and foremost, ALS stands for amyotrophic lateral sclerosis, and addition to its better-known acronymic name, it’s often called Lou Gehrig’s Disease, after the famous baseball player once diagnosed with the ailment.

Here’s a list of facts from the ALS Association that are easy to digest and help explain the prevalence and severity of the disease: 

ALS is 100 percent fatal.

ALS is responsible for an estimate of 2 out of every 100,000 deaths annually.

About 5,600 people in the U.S. are diagnosed with ALS each year, and about 30,000 Americans have the disease at any given time.

The life expectancy of someone diagnosed with ALS averages between two and five years, and more than half of all patients live more than three years after being diagnosed. Some, however, live much longer. Famed scientist Stephen Hawking has lived with a disease related to ALS for decades, for instance.

About 20 percent of people with ALS live five years or more, as many as 10 percent survive longer than 10 years and 5 percent live 20 years. According to the association, “there are people in whom ALS has stopped progressing and a small number of people in whom the symptoms have reversed.”

There is one drug approved by the Federal Drug Administration for ALS treatment, and it has been shown to extend the lives of patients by just a few months.

ALS is not contagious.

Jackie Farwell

About Jackie Farwell

I'm the health editor for the Bangor Daily News, a Bangor native, a UMaine grad, and a weekend crossword warrior. I never get sick of writing about Maine people, geeking out over health care data, and finding new ways to help you stay well. I live in Gorham with my husband Nick and our hound dog Riley.