ALS, Voice Preservation, and Adaptive Skiing (Full Transcript)

[00:00:00] Speaker 1: I've skied practically my whole life. I love the feeling it gives me deep in my soul. My dad instilled his passion of skiing in me at a very young age, which I in turn did with my 2 sons, Ari and Ethan. The thought of not being able to ski as I had for the majority of my life was a very difficult reality to face and one I was not prepared for. It didn't feel real. It felt like a terrible dream that I wanted to wake up from. My name is Zachary Braun. I was diagnosed in March 2024 with ALS, Lou Gehrig's disease, and I was formerly a banker for 21 years. I was dealing with strange symptoms with my speech and throat that continued to worsen over the course of 2 years. We saw doctor after doctor who could not provide answers until a doctor at Rush Hospital in Chicago suggested I may have ALS. The world stood still, yet it was swirling around us as we grasped the news that had just been delivered. A million thoughts, high in and out, and you are in complete disbelief. And truthfully, 2 years later, we still are.

[00:01:16] Speaker 2: When he got diagnosed, you could immediately see, like, progressively over the next year, it just, like, getting worse and worse and worse to the point where he just isn't able to talk anymore, which is really hard to watch, especially as, like, the oldest son. Like, you're losing your dad.

[00:01:37] Speaker 3: It was sad because... were we not going to hear his voice again? And the thought of that, um, was hard. Um, Zach lost his father, I lost my father, and one thing we often talk about is always remembering their voice and not forgetting what they sound like. So that was something that I think this technology brings to life, is that when he talks to us and communicates, we still hear Zach.

[00:02:17] Speaker 1: I went to Austin and Nashville with my high school friends.

[00:02:21] Speaker 2: They're super patient with me.

[00:02:25] Speaker 1: My Eleven Lab's voice is my lifeline to communicate. I am in awe that the sound of my voice is preserved, how much it sounds like me and that it allows me to communicate as myself. I am in awe that the sound of my voice is preserved, how much it sounds like me and that it allows me to communicate as myself. To hear my actual voice when communicating provides me with some sense of normalcy, and I think those I am communicating with appreciate hearing me in the voice they have always known. I hate that I can no longer speak, but having not lost the sound of myself is a gift that I am so grateful to have. While our lives have become complex and difficult with many adjustments needed to be made, it's one thing that we've been able to preserve and feels normal because it's me. The sound of my voice is not lost.

[00:03:17] Speaker 2: The voice app, it was amazing. I mean, just putting together, I know my mom talked about it, putting together the clips of the voices, and my family started crying just hearing it because he wasn't able to talk while we were doing that, and it was just, like, hearing how it used to sound was so amazing, and now that I can hear that every day when he types on his phone, it's just incredible.

[00:03:37] Speaker 1: Linda and I are so fortunate to be surrounded by so much love and support from our friends and family. They have not only stepped up during this time, but they have stepped in without hesitation. They show up, and they show up big. They find ways to brighten our days and bring light into our home. We went on a family ski trip to Steamboat last March, and my wife Linda connected with the adaptive ski program there, STARS. They brought me an adaptive ski sled, and I learned how to ski using it. I found myself smiling, laughing, and feeling that wind-in-your-face exhilaration I felt before as I took in the beautiful blue skies and mountains around me. I could hear people cheering me on from the chairlifts above me as I skied down. Ari and Ethan joined Linda and I, and we were back skiing as a family again. Was it how I envisioned myself skiing? Not in a million years, but I set that aside and allowed myself to accept this new reality because my love for skiing is instilled in me forever. It was exhilarating. Right when we finished, I asked if we could do it again.