Monday, May 4, 2015

How Much Do You Know About ALS After The Ice Bucket Challenge?

May is ALS Awareness Month. Last summer millions of people posted videos on social media dumping buckets of ice water over their heads. The Ice Bucket Challenge (IBC) raised over $100M for the ALS Association and millions more which benefitted other research and advocacy groups. There were news stories and "ALS" was heard for months on TV and around the water cooler. People were moved to action in a way I've never seen.

But, and there's always a but, after the final check was written and the ice buckets were filled with sand for the winter up north or filled with tools or toys down south, how much did YOU really learn about ALS?

It's an important question. One that requires a little soul searching. Did you do the IBC because you were challenged and wanted to post the funniest video of all your friends? Did you do it because everyone else was? Or did you take the next step, research ALS and the devastating impact it has on over 30,000 families each year? And did you then do something?

Please don't misunderstand. I have nothing but respect and thankfulness for the millions of you who dedicated videos to me and the thousands in my "ALS Family". The intensity of focus, joy and funds raised continue to bring back fond memories.  Pete Frates and Pat Quinn, the masterminds behind the IBC, deserve our eternal thanks for turning a silly idea into an epic, worldwide fundraising event.
But (there it is again), if the IBC was at least partly about awareness, how much awareness is in place today? How often do hear the acronym "ALS" on the news or around the water cooler today? I'm concerned that we've lost the momentum created by the IBC. That it's the same people and groups, mostly driven by families and advocates who have been touched by ALS, who carry on the fight. The rest of you have picked up life as you did before the IBC. 

We in the ALS community use  the word "awareness" often. But is awareness the same as education? Webster's defines awareness as: knowing that something (such as a situationcondition, or problemexists. By definition therefore, awareness isn't enough. Families fighting ALS need people around the world to have a deeper understanding of this horrific disease beyond "Oh yeah, I did that ice bucket thing last year." 

Education goes much deeper than the statistics. We can spout all the facts and figures until we're blue in the face. Most people only develop an intimate knowledge of a subject by experience. We need replace the word "awareness" in our lexicon with "experience". 

The amazing team at HARK (  have recognized this and are taking action. They are doing something more. They will soon be announcing "The Get Involved and Help Tour"  ( The premise is beautiful  in its simplicity: The tour will target a college or university in each of the 50 states and partner that institution, it's students and faculty with a family with ALS in that state.

Imagine, in addition to gathering on campus to film a mass ice bucket event, nursing students spending time with an ALS family. Learning the practical application of their vocation and gaining insight of a disease they might otherwise see mentioned in a brief paragraph in a textbook. Imagine students from other academic disciplines spending time with the same family, getting to know their daily struggle and walking away with changed hearts and minds. Imagine that. 

Yesterday I Tweeted a quote from Dietrich Bonhoeffer that goes "Action springs not from thought, but from a readiness for responsibility." I added #DoSomething. So, when the ice bucket challenge comes around this year, and it will and it's worthy, take an extra step. Find an ALS family and get to know them. Volunteer to help one of the many ALS advocacy groups. Get your hands dirty. Do something.