This is the ALS Ice Bucket Challenge. I nominate Ellen DeGeneres; you’ve been nominated a few times. You should do it, girl, it’s for a good cause. I also nominate Miley Cyrus.
I nominate Kristen Wiig and I also nominate Michael Stevens of VSauce, and the whole sourceFed team of YouTube. You know, you have 24 hours to either do the ALS Ice Bucket Challenge or donate $100 to ALS TDI. You could find them at als.net. They’re absolutely the best organization to help find a cure for ALS. Let’s do this.
OK, that was probably the most embarrassing thing that I’ve ever done in my entire life. Holy shit, that one’s pretty crazy, right? Why did I do it? I’ve been so terrified of ALS my entire life because it runs in my family. ALS runs in my family. My grandmother had it; she was second mother to me. My mother was diagnosed when I was in high school. Five months ago, I was diagnosed at 26 years old. ALS is so, so fucking scary, you have no idea.
I hate talking about it; I really hate talking about it. That’s probably why nobody talks about it, its because it’s so challenging to watch. It’s so challenging to see and to talk about. Nobody wants to see a depressing person that’s dying, that has two to five years to live. They don’t want to talk about it. They don’t want their day ruined.
People are getting frustrated about seeing the ALS Ice Bucket Challenge right now, and that’s fine, that’s fine. That means our … you know, our awareness is working. It wouldn’t be successful if we weren’t irritating a few people, right? I promise your newsfeed will go back to cat videos and “Let It Go” covers. Right now, the ALS community has the main spotlight. For once in my entire life, I’ve seen it in the forefront. Usually when I say to someone, “I have ALS, my mom has ALS, my grandmother has ALS,” they have two responses. They either … totally confused and have no idea what ALS is; usually attributed to Lou Gehrig’s Disease, or they know completely how terrifying it is, and the conversation is usually pretty short.
Only 30,000 people in the U.S. have ALS. Not many people know about it and there’s not very much incentive for the pharmaceutical companies to invest at billions of dollars it takes to develop a drug because I’m not profitable. I’m not worth saving?
Right now my hands are starting to atrophy away; they’re getting weak; having trouble starting my car, buttoning my shirt. Eventually, I won’t be able to use my arms or hands at all. Eventually I won’t be able to walk, talk, and breathe on my own. That’s the real truth of what ALS is. It’s devastating, it’s costly, it’s not profitable.
This video is all over the place with emotions and I’m … you know, I apologize for my rant and for my tears. If I don’t … if I simply dump ice in my head, I don’t think you’re really going to get the point. I thank you for sharing this video in advance. This is the first successful advocacy we’ve every really, really, really had, and I am so, so, so grateful. You have no idea how every single challenge makes me feel; lifts my spirits, lifts every single ALS patients’ spirits. You’re really, truly making a difference and we’re so, so, so grateful. Love you.There may be small errors in this transcript.