• There’s a time for us... A place and time for us…

Posted: October 20th, 2011

“There’s a time for us

A place and time for us…”

- Death scene, West Side story

They knew, they were sure, and yet the star crossed lovers in Leonard Bernstein’s touching retelling of Shakespeare’s tragic love story know that their time is not now.

I was reminded of this scene last week at a spectacular fund raising event for ALS in Atlanta. The Night of Hope event was actually sponsored by the Muscular Dystrophy Association. One of our trial patients received an award for his hard work and support of ALS research. In his acceptance speech, he revealed that he was patient #12 in our trial.

He gave a moving speech, in which he recounted how he and his wife have lived their life since his diagnosis. He brought home so dearly how the little things begin to matter in one’s life; how vital to live every moment of every day; not doing big things, but simply being, simply loving. He implored everyone to think of a person who had once been important in their lives, yet someone they hadn’t spoken with in over a year. He then made everyone promise to call that person the next day and re connect (there were at least 500 people in the room at the time). He was equally moving when talking about ALS research. In particular he pounded the table with certitude that this WAS indeed, “our time” as he put it. The time to find treatments and a cure for ALS.

It was the same message propounded by a series of speakers throughout the evening. There is almost a palpable feeling in the air, that years, decades even of research is about to begin to produce results. He was speaking not only of Neuralstem’s efforts; but the entire research community. And I thought how bitter sweet such a victory must seem. And I thought about how much courage it must take to wage a battle where one knows that victory is most likely for someone else. And yet that has been the reality of their fight.

There is a brutal urgency of now involved for these patients, and these families. And yet you rarely if ever hear a bitter or angry word. There seems to be a grace granted to them to bear this burden. It is hard to explain and incredibly humbling. To meet a patient or their family is to be touched deeply.

And to be part of such a gathering of the entire ALS community, the patients, the families, the researchers, and the fundraising support organizations enforces the dawning realization that this fight, though far from over, is winnable. And that there is a time and place for them, and that time is now, and that place is here.

For those of you who are interested in helping their cause, I urge you to go the ALSA or MDS websites where your research contributions will be welcomed, and well used.