While ALS has certainly gotten so much more focus than it would have otherwise, now that all the ice buckets from all the ice-bucket challenges have been emptied, those on the front line are still suffering, with too little funding and often with little company.
You may not know anyone with ALS. You may not want to know about this disease, or how devastating it is. You may not want to think about things that are so frightening or painful or things that could actually happen to you.
I began looking into the ice-bucket challenge because I was thinking of launching a challenge of my own. It turns out that it originated as the Cold Water Challenge. It was to donate to cancer research or jump into cold water. But my challenge is a bit different.
The daily life of ALS is constantly filled with challenges for everyone involved. It is not just me, the patient (I hate that word), but for everyone around me. This is never more true than when travel, especially air travel, is on the horizon.
Claire's story reinforces a fundamental truth that is so important to remember but so easy to forget: Everyone you meet is fighting a hidden battle that you know nothing about. Be kind, and live from your heart, and share your love and support.
Anyone who is familiar with ALS knows that it is tenacious and a master thief. It robs its victims of the physical use of their bodies, but maybe even more damaging is how it rapidly steals away elements of life like privacy and dignity.
The film Still Alice starting Julianne Moore which deals with early onset Alzheimer's, has a back story in which one of the two directors was diagnosed with ALS, something poignant in and of itself, and something which had an impact on the film's direction as well.
More than any other couple we've ever interviewed, Ron and Mariah embody the principle that when two hearts are separated, all difficulties can seem insurmountable, but when they are united as one, nothing is impossible.