ALS and why you need to get over yourself

We’ve all seen the videos by now. Some cynics and naysayers have trashed it because it’s taking up space in their precious social media feeds between SUPER important updates like check-ins at gyms and knowing where that kid you haven’t seen since high school went to dinner.

ALS is a horrible f*cking disease. There is no sugar coating it, no dressing it up prettier that that. Sufferers slowly become prisoners in their own body, turning into quadriplegics over the course of a couple years, eventually unable to move or speak or breathe, requiring a feeding tube and, if they’re lucky enough to be able to afford it, full-time nursing help. Eventually, inevitably, this disease will kill them. There is no cure, there is no treatment, and there is still next to nothing known about Lou Gehrig’s disease.

Our family watched one of the best men to grace this planet succumb to the disease. From active and healthy 40something to a shell of his former self, wasting away to less than a hundred pounds when he passed. This isn’t something that only happens to other people, this isn’t something that you can avoid by eating right or exercising enough or by avoiding certain activities. It’s a devastating disease that eats away at a healthy body with no known cause and no way to stop it.

Is this ice bucket challenge silly and gimmicky? Yes. Is it making an amazing difference in awareness and donations to ALSA? YES YES YES. As of Tuesday, the ALSA had received $23 million in donations in a month, compared to $1.6 million during the same period last year. Over 307,000 individual donations were made by new donors, people that had never donated to the ALSA before. Those are amazing numbers. An awareness campaign with a side of celebrities has done huge things and made a major impact and that is something truly special. Unfortunately, without the hooks and gimmicks, people don’t donate. It’s as simple as that. I’ve stood in line at CVS dozens of times and heard hundreds answer “no” when they’re asked if they want to donate $1 to ALS research. One dollar. They don’t do it. It’s too much to ask.

I know you’re oh so interested in posting potty training updates and selfies, but it wouldn’t hurt to branch out just once. Isn’t something like this – something with a real, tangible and countable impact – what social media should be used for? To turn the spotlight on something that needs the attention? Yes, there are horrid things going on in the world right now. Is donating to a charity and your friends dumping water over their heads really the only thing you have to worry about right now? If it is, you’re the luckiest person in the world. I invite anyone that thinks this isn’t a cause worthy of your time and attention to sit down with someone effected by this disease – the sufferer themselves or any of the endless families that have had every single aspect of their lives changed forever. I’ve written checks to this organization every year since 2001 in honor of my uncle Steve Panetta. You can do it once, right? Right?

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