Moving forward to end ALS

Dear Friends,

Did you ever stop to think about how water can move? Or think about how people can move as well? I’m not talking about specific actions, but just the basic ability. But there’s a caveat that many people forget: those with ALS lose the natural ability to move as their motor neurons die and their muscles cease functioning.

I say this because that’s exactly what happened to my dad as his ALS progressed. He first started showing symptoms before I was two years old, but wasn’t formally diagnosed until I was five. As you may know, he died of the disease when I was seven. Unfortunately, because I was so young, I don’t have many memories of my dad, and I certainly don’t remember him without ALS.

Over the past few years, I’ve come to realize how especially difficult it must have been for my dad to know he wouldn't be able to watch my sister and me grow up, to not be able to do things on his own because he couldn't move his muscles, to not being able to eat or talk (two of his most favorite activities), and to know that he was rapidly and uncontrollably dying.

Right now, though, I want to talk to you about growing up. There are different moments in each person’s life that define the stages of their childhood. For me, a major stage was when I was six, when I first started to fundraise. But there are other, less exact moments or stages throughout growing up. Moments like being taught how to ride a bike, going outside to play ball, laughing and being told that someone loves you. All of these things, among many others, I couldn’t do with my dad and my dad couldn’t do with me because ALS robbed him of those abilities. And now that I’m 18, I should add one more thing to this list: starting college. In two weeks, I’ll start my first semester, and I can’t help but think about what it would be like to have my dad also there watching me, helping me move in, and giving me advice.

But perhaps I should also explain why 18—my current age—is a special number. Each letter in the Hebrew alphabet holds a numerical value. When put together, the letters representing “18” form a word meaning “life” or “living.” Not only is this relevant to my moving on to the next step in my life—notably without my dad—but is also of importance because my dad was so full of and immensely enjoyed life.

The money that I raise for ALS research still goes to the same place: the ALS Therapy Development Institute, which is the only nonprofit biotech dedicated solely to finding effective therapies to treat and cure ALS. This past year, the Institute successfully entered Phase I FDA trials for their most promising drug candidate to treat ALS, called AT-1501, and is preparing to enter Phase II trials in humans later this year. This would not have been possible without your support.

Please take a moment to help me continue to honor my dad, and to offer hope to those currently living with ALS, by making a contribution of any amount to fund vital scientific research. I would greatly appreciate your generosity, support, and kindness.

Warmest regards,
Sam Halpern