At a recent event with HARK we shared the stage with a young nurse who had lost her mother to ALS. I listened as she spoke of her experience, both tragic and inspiring all at once, and was particularly shocked to learn that in her 4 years of nursing school, ALS was only mentioned in a single slide containing a few meager bullet points.

My surprise that ALS is relatively unknown despite how horrible it truly is has long faded. It was what we set out to change by venturing into the White Mountains for HARK in the first place. But to learn that in a field of medical education it is scarcely even mentioned succeeded in blowing me away all over again.

I have had the privelege of becoming friends with many incredible people through their battle with ALS. To think that their stories, each of which has changed my own life drastically can go unheard is troubling enough to deal with.

To be confronted with the fact that ALS is almost blatantly absent in our education system is a bit more than I am able to fathom. Yet it is as renewing as it is frustrating, as it reminds me once again how important it is that the ALS story be told, and that I am fortunate enough to be a part of the organization that is determined to tell it.