Ice buckets & ALS

August has come and gone, and I didn’t see a single ice bucket challenge in my facebook or instagram feed this year. Truthfully, I don’t really care whether or not you dump a bucket of ice water on your head. What I do care about is continuing to raise awareness about ALS.

I care about real people facing a horrific disease.

Last year, a young man named Anthony Carbajal made an ice bucket challenge video that went viral. He has since made numerous appearances on The Ellen Show and numerous events. What was so powerful about his video was his vulnerability in sharing his fear at facing the disease he was diagnosed with at age 26.

ice bucket challenge video

The disease runs in Anthony’s family; his grandmother died from ALS, and his mom (pictured above) is still battling it.

This year, Anthony and his adorable new wife made another video, explaining why they hope to see ice bucket challenges continue every August until a cure is found. It’s worth a watch; please take a few minutes to do so.

Another inspiring man bravely facing this disease is Jay Smith from the site Every90Minutes, so named because a new case of ALS is diagnosed every 90 minutes.

Jay Smith

I follow him on facebook, and his updates often make me cry. But not just because I’ve seen the brutality of this disease firsthand, but because he is not letting it get the best of him. At 38 years old, with two young daughters and a lovely wife, he maintains a perspective that awes me. Take this example:

“A few months ago I lost my dexterity and strength to feed myself. Since then my wife has been feeding me. When people see us I imagine they see a newlywed couple romantically sharing a meal. My perception was dashed when she recently introduced the choochoo train and airplane landing. It’s nice to know where I stand. #goodBoyDaddy #Every90Minutes”

Last year’s ALS ice bucket challenge raised millions of dollars for ALS research, and perhaps just as importantly brought this disease to light. When my dad was diagnosed just a few years ago, most people still didn’t know what the disease was unless I said “Lou Gehrig’s disease.” Even then, most still only vaguely knew anything about it. Thanks to the ice bucket challenge, that’s changed. And there are real faces to go with it. Like my Dad’s.

my dad, the face of ALS

So, ice bucket challenge or not, please don’t let ALS awareness fade. Remember there are many, many real people battling this disease — and there is still no cure and there are very few treatment options for ALS.

*Edited to add: When I saw Angela’s story, I had to share one more real face, one more real story. At age 29, this firefighter/EMT was diagnosed with ALS — just two weeks after finding out she was pregnant. Please take a moment to read her inspiring yet heartbreaking story.