Amyotrophic lateral sclerosis (ALS) is a progressive disease, striking slowly and then with increasing ferocity. It is an all out assault on the motor neurons, the nerve cells in the central nervous system that control voluntary muscle movement. ALS is truly cruel, leaving its targets unable to move, unable to speak, but fully aware mentally.
But ALS does have a weakness. It cannot break the human spirit. Every day, brave ALS patients look the disease square in the eye and say, “No, you cannot take this from me.” They are going to keep swinging. They are going to keep winning.
Jason.
Probably one of the most well-known ALS patients is guitarist and composer Jason Becker. A guitar child prodigy turned professional musician, Jason stood at the brink of greatness when he was diagnosed with ALS. The year was 1990. Jason had just been recognized as Guitar Magazine’s “Best New Guitarist” and was the featured lead guitarist on David Lee Roth’s A Little Ain’t Enough album.
Jason shrugged off the diagnosis, and announced that he was going to beat it. He returned to the studio, where he switched to lighter strings and changed techniques to compensate for his weakened left hand. He was able to finish the album, but couldn’t join the band on the tour.
Jason’s condition deteriorated quickly. He transitioned from cane, to walker, to wheelchair. Soon he was bedridden. HIs voice was the last thing to go. But Jason composed an album, first on guitar, then on keyboard, and finally with the aid of a computer when ALS stole his ability to hold an instrument. Jason finished and released Perspective in 1996. He would go on to release two additional albums, Raspberry Jams in 1999, and Blackberry Jams in 2003.
And Jason was far from finished. In 2004, Shrapnel Records released Collection, including three new songs and several unreleased tunes from his days playing in Cacophony. The album is performed by a loaded roster of guitar legends, including Marty Friedman, Greg Howe, Joe Satriani, Michael Lee Firkins, Steve Vai, and Steve Hunter.
Jason is defiant and matter-of-fact about his condition. “I have Amyotrophic Lateral Sclerosis,” he says. “It has crippled my body and speech, but not my mind.” Jason is currently working on his next album and hopes to release it in July 2017. He started an Indiegogo campaign to fund the project. If you want to help, you can do it right now.
Jay.
Our next story hits much closer to home for the Sweetwater family. Jay Smith is the CEO and Founder of Livid Instruments, an Austin-based music technology company and long-time Sweetwater vendor.
Jay’s story is the same as that of most ALS patients – a perfectly good life interrupted by a perfectly evil disease. No one tells the story better than Jay himself. Listen as he tells it to one of the many charities he is involved in.
When it comes to Jay’s fight against ALS, Wonders & Worries is just the tip of the iceberg. Jay is a prolific blogger and an author for the Huffington Post. His keen mind and sharp wit help to keep ALS research at the front of every conversation. One of the best examples of Jay’s handiwork is an article for the Huffington Post, where he posed as a reporter and interviewed himself. In the interview, he expressed his desire to be made into a robot, ala RoboCop. “RoboCop came out like thirty years ago so they [the scientific community] obviously know how to do it,” he declares. “I don’t understand why no one else has been turned into one.” A funny, yet stinging indictment of the attention ALS receives. “ALS is not incurable disease,” Jay explains. “It’s an underfunded disease.”
The main weapon in Jay’s fight against ALS is his fundraising effort, the 90 Foundation. Jay named his foundation after a chilling statistic: “Every 90 minutes someone is diagnosed and another dies of ALS.” The foundation works tirelessly to raise funds, committing 100% of the money to research through many organizations, including The Houston Neurological Institute and the ALS Therapy Development Institute.
Again, we will leave it up to Jay to leave you with an inspirational call to action. “If you’re reading this, you may feel the urge to be sad, angry, or have pity. Please don’t be sorry. I’m not and you shouldn’t be. I’ve taken this time to reflect on how much love I have in my life and it’s made me happier than I’ve been in years. Take this time to reflect on your life and be thankful for what matters most. Please take a moment to help us end this disease. Finding a cure is up to us. I plan on being around for the cure of this disease. Thank you for taking part in my journey.”
If you’re ready to join Jay on his journey, you can learn more about The 90 Foundation and make a donation at Every90Minutes.org.
Stephen.
ALS never stops. In March 2017, SpongeBob Squarepants creator Stephen Hillenburg announced that he had been diagnosed with early-stage ALS. Like his fellow ALS fighters, Stephen has already drawn a line in the sand. “Anyone who knows me knows that I will continue to work on ‘SpongeBob SquarePants’ and my other passions for as long as I am able,” Stephen declared. “My family and I are grateful for the outpouring of love and support. We ask that our sincere request for privacy be honored during this time.”
How will Stephen take his fight to ALS? We don’t know. Chances are Stephen doesn’t know either – he only found out a couple months ago. But whatever he chooses to do, we know his decision will be based on courage, strength and a stubborn will to win. We’re with you, Stephen.
Three cases of ALS. Three people who have chosen to fight rather than give in to the life-altering realities of this disease. The Sweetwater family stands with their families, offering support, encouragement and prayers in our own ways. We are inviting you to join us in the fight for a cure. Donate to the cause of your choice. Volunteer at a local treatment facility. Take the ALS Bucket Challenge. As long as ALS patients keep swinging, we will all keep swinging with them.