“ALS As Rare As A DeLorean?” Chapter 101

Have you ever noticed that when you are looking for something specific, it always seems to be as hard as finding a DeLorean? However, when you do find it, they are everywhere!

This is exactly how I feel about ALS. When I participated in the Ice Bucket Challenge 10 years ago, I couldn't have told you what it was for. Even up until 3 years ago I would have not been able to tell you what ALS was. As a matter of fact, many people in the healthcare profession would say the same. However, if you ask me now, I see ALS everywhere, but I don’t see DeLoreans.

There were only 9,000 DeLorean’s built from 1981-82 which is less than one percent of cars built during that period. There’s an estimated 4,500 of those cars left. No wonder they are hard to find.

Now, if you were to compare the 9.1 of 100,000 per year a person is diagnosed with ALS, you could argue that ALS is in fact, as rare as a DeLorean. Proof, PALS are both rare and falling apart like the DeLorean and both need to be saved and restored as well.

So why is it that if you ask someone if they know what a DeLorean is, most would know. But if you ask what ALS is, most people can't tell you. Is it really because of three movies that came out in the 80’s?

ALS has movies! There are many movies and documentaries about ALS, including biographical films, documentaries about the lives of people with ALS, and a documentary about the I AM ALS campaign.

“You're Not You” -Hilary Swank stars as a classical pianist who befriends her college-age caregiver after being diagnosed with ALS. 

“The Theory of Everything” -Eddie Redmayne stars as Stephen Hawking, a theoretical physicist who lived with ALS for over 50 years. The film is based on Hawking's ex-wife's book, Traveling to Infinity: My Life With Stephen. 

“Gleason” -A documentary that follows the life of former NFL player Steve Gleason after his ALS diagnosis.

Now ask someone to name a movie with ALS and see if they can name one? Hint: There’s about a dozen. I have an idea. Let’s get some PALS to drive around in a DeLorean and see if that helps.

Once we tune into something, ours eyes open WIDE 👀 and we find it everywhere.

Shortly after I was diagnosed, my friend Mike was looking for a leadership book to read and was reading some book excerpts to decide what to read next. He came across my favorite book, “Tuesdays with Morrie.” Right there, looking right at him, the excerpt read: “The book is about a series of visits Albom made to his former Brandeis University sociology professor, Morrie Schwartz, as Schwartz was dying from amyotrophic lateral sclerosis."

BTW - do you know why we use the acronym ALS? Because nobody can spell amyotrophic lateral sclerosis unless you’re a spelling bee 🐝 champion. And it’s already hard enough to speak when you have ALS, let alone tell someone you have amyotrophic lateral sclerosis. 🤣

Just the other day I was watching “Chopped" on the “Food Network.” More specifically, I watched season 15 episode 12, and one of the celebrity chef’s was playing for a charity called “Project ALS.” The show aired 11 years ago and I’ve been LIVING with ALS three years, and I hadn’t heard of “Project ALS" until watching the show. They are a great organization whose mission is to identify and fund the most promising scientific and medical research that will lead to the first effective treatments and a cure for ALS. The organization was started In 1998, after Jenifer Estess, a thirty-five year old New York theater and film producer, was diagnosed with ALS. Her doctor told her to “max out her credit cards and eat junk food.” Here I am trying to be debt free and eat right, only to find out I have been doing wrong.🤬

I was watching baseball and saw that Phillies' pitcher Aaron Nola is donating $1,000 to ALS for every strikeout he records this season. With 197 strikeouts, Aaron is making an incredible impact in the fight against ALS in honor of his late uncle Alan who passed from the disease.

I was watching football updates (GO COWBOYS!), and during one of the ESPN shows they interviewed The New York Jets punter, Thomas Morstead. He is raising money for ALS awareness and Team Gleason, a nonprofit that helps people with ALS, through his Punt for ALS campaign.

There have been many celebrities who have been touched by ALS. A few months back Sandra Bullock’s longtime boyfriend died of ALS. Jim "Catfish" Hunter, Jacob Javits, David Niven, Charles Mingus, Kim Shattuck, Mike Porcaro, Dwight Clark, Ezzard Charles, Steve Gleason, and Tim Green and many other notable people diagnosed with ALS over the years.

As you can see, we have movies, books and celebrities. Even better, we have the most amazing ALS bloggers, influencers, advocates and non-profit organizations around. All of them have been viewed by millions of people, and yet the DeLorean is still more popular.

Is ALS simply too small of a disease that big pharma and others don’t care? Or because there’s not enough money to be made? Or because we just die too fast for anyone to care? Are enough people not touched by ALS for people to open their eyes 👀 to see us?

I don’t want to be as rare as a DeLorean anymore. I want to be a Dodge Ram Truck with a HEMI, big ass tires 🛞 and a LIVING flag flying high wrapped in Cowboys colors so everyone sees me and know I am here. I want ALS to be like COVID and have a vaccine in six months. Big pharma made billions.

I will continue to keep doing my part and be a truck until ALS is a living disease and beyond. What vehicle do you want to be?

Love and Blessings

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