Unless you live on Mars, in a cave, with your hands over your ears, you’ve heard about the ALS Ice Bucket Challenge. This latest Internet craze has everyone from “that guy on Twitter you followed because he had a cool picture” to Justin Timberlake posting shaky, handheld cell phone videos of themselves being doused with ice water, and then nominating people they hate, err, love, to do the same. Now, while most Internet memes are invariably pointless and frequently dangerous, this one actually happens to have a point, and even a legitimate cause behind it. A rare thing indeed.
Before we go any further, though, let’s talk about ALS. The full name of the disease is amyotrophic lateral sclerosis, and it’s more commonly known in the U.S. as Lou Gehrig’s disease. The well-known Yankees baseball star was diagnosed with the illness at age 36, and had to leave baseball forever. He died only two years after that, and people simply attached his name to the disease that took his life.
While ALS is not an autoimmune illness, it certainly is chronic and the very definition of degenerative. The body’s motor neurons begin to deteriorate and the patient experiences severe muscle weakness and atrophy. In the most serious cases, the patient will lose all control of his or her body, and eventually the diaphragm and rib cage muscles can no longer function well enough to allow the patient to draw breath. At this point, a ventilator is required, and many patients elect to undergo a tracheotomy to avoid a breathing tube. This doesn’t stop the progression of the disease, though, and the majority of patients end up dying from pneumonia and respiratory failure with an average time from onset to death of only 3-5 years.
As you can see ALS is no picnic, and just like autoimmune illness, it only gets worse. Unfortunately, as of now, there are almost no medications to treat the cause of the motor neuron breakdown. Mostly all that’s available are medicines to help with muscle spasms and other symptoms, which is a familiar tune for us autoimmune folk. As we all have learned, that’s where money for research plays a huge part. Diseases like ALS and RA thrive on donations, and as you are all aware, the ALS association began the Ice Bucket Challenge to further this goal. To date, the numbers released say the challenge has raised almost 25 million dollars for the cause – money that is sorely needed. Now, I realize that no one can tell what exactly makes for the next Internet sensation, but even if it hadn’t become the meme du jour, the ALS Ice Bucket Challenge would certainly have raised more money than using the same old boring tactics. This is why I have a great respect for those at the ALS association. They did what the Arthritis Foundation seems unwilling or unable to do – take a chance and think outside the box for once.
Those of you who read my column regularly know that I am not a big fan of the old school fundraising methods. Begging for money with no reward to the donor, approaching large corporations for sponsorships, and the yearly walk are all methods that worked in years past, but this is a new era. Now, with websites like Kickstarter, people can harness the power of the individual, and millions of dollars can be raised if the cause is worthy and the execution is clever and engaging. That’s pretty much the opposite of what we have now. If we put aside the fact that the Arthritis Walk is a walk for people with arthritis, and that the name itself is an oxymoron, then even so, we still have a boring event that never, ever, “wows” anyone. In fact, the last time I attended, I think I saw several elderly people napping through the presentations. Trust me, people will never be falling over themselves to donate to, or even attend, the walk, plain and simple. What I’ve been saying for years now is that we need to think outside the box and come up with something crazy, something hip, and something wild. The children of the Internet age are no longer satisfied to send their monthly check to their preferred charity and take a tax deduction at the end of the year. This new generation wants some bang for their buck, they want some razzle dazzle. The Ice Bucket Challenge gives this in spades, and it’s why the initiative is so successful.
We need to come up with a plan that will both raise awareness and get people to donate, and if the Arthritis Foundation can’t do it, then they need to hire someone who will. Yes, I realize that the ALS association probably didn’t expect the Ice Bucket Challenge to go as wide as it has, but I’m sure they had high hopes. Whoever was in charge there knew that it is time for a quantum shift in charity fundraising. Who says that cold calling, spamming mailers, and stuffy galas are still the best way to get your cause funded? I know that those things work and people are used to them, but it’s time to hang these practices with their own cummerbund. All I can say is that the Arthritis Foundation needs to look up because they are a dinosaur that’s about to become extinct.
So, in order to honor the ALS association, but, really, more to show them how impressed I am with their outside of the box thinking, here is my ALS Ice Bucket Challenge video. If you haven’t seen it already, take note – it’s not just a run-of-the-mill water dump. After my lovely fiancée Allison was nominated by a friend, she said, “I wish we could show people what it’s really like to live with chronic illness.” To which I said, “Hmmmmmmm.. you might be on to something!” After a good amount of planning and then a good amount of me begging Al to “come on, just do it!” we came up with what you see below. Please, enjoy the video, have a few laughs, and donate to both ALS and arthritis – and keep on giving!