The Genius of the Ice Bucket Challenge

I’ve already had some non-profit clients ask me about how they can do an “ice bucket” challenge for their cause. I’m still working on that. Incredibly, there has been some negative backlash about the social media phenomenon. I don’t get that, at all. Anything that raises awareness about Amyotrophic Lateral Sclerosis (ALS) as well as research money is a very, very good thing.There is no bad PR in this situation, when you are talking about a terrible killer like ALS.

In fact, over the weekend the ALS Association ( said that more than 13 million dollars has been raised so far this year for research—that’s several times more than last year, because of the ice bucket challenge. It’s always hard to predict what is going to capture the public’s imagination about any charitable initiative.

I was working on a TV campaign for the Lance Armstrong Foundation back when Nike was introducing the yellow wristband, which became a similar kind of phenomenon. I have vivid memories of Bart Knaggs shooting them at me in Austin like a rubber band. At that moment, it was hard to visualize everyone in America wanting one, but that’s pretty much what happened.

But the wristband is different in the way that cancer touches everyone. ALS only has 5,600 new diagnoses in the US every year. It does hit home with me because a close friend’s sister died of ALS, and he and his family members live with the prospect that they may be at higher risk for the condition. I was probably more familiar than most people because I helped with the launch of Rilutek (generic name riluzole) in December of 1995. Rilutek is an important milestone in the treatment of ALS. Although it only prolonged patients’ lives 2-3 months, that is still considered a major advance in the treatment of this horrific disease. We had planned a big press conference in New York to support the announcement, but there was a major snowstorm the day of the event, so we were forced to put the press conference on the web. Remember, this was 1995. We were astonished to find that 15,000 people participated in the webcast—at a time when there were only 30,000 ALS patients alive. But that shows how desperate the community is for a treatment—any treatment. (It also taught us that people with disabilities rely heavily on the internet—at that time it was a “new” strategy).

ALS is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Motor neurons reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body. The progressive degeneration of the motor neurons in ALS eventually leads to their death. When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost. With voluntary muscle action progressively affected, patients in the later stages of the disease may become totally paralyzed.

Most people who develop ALS, are between the ages of 40 and 70, with an average age of 55 at the time of diagnosis. Of course, my generation knows ALS as Lou Gehrig’s—I wonder if that rings any bells with millennials? Sadly, cases of the disease do occur in persons in their twenties and thirties. Generally though, ALS occurs in greater percentages as men and women grow older. ALS is 20% more common in men than in women. However with increasing age, the incidence of ALS is more equal between men and women.

There are several research studies – past and present – investigating possible risk factors that may be associated with ALS.  More work is needed to conclusively determine what genetics and/or environment factors contribute to developing ALS. It is known, however, that military veterans, particularly those deployed during the Gulf War, are approximately twice as likely to develop ALS.

Half of all people affected with ALS live at least three or more years after diagnosis. Twenty percent live five years or more; up to ten percent will live more than ten years.

There is some evidence that people with ALS are living longer, at least partially due to clinical management interventions, riluzole and possibly other compounds and drugs under investigation. This is why research is so important and every research dollar is precious. My congratulations to everyone who took part in the “ice bucket” challenge. You really are making a difference!