When I started the Stevie Fever For ALS Instagram account, I followed other charity organizations and personal accounts run by people living with ALS. Having a front-row seat to Steve's harrowing, cruel journey with ALS made it even more heartbreaking to see these posts from people facing insurmountable daily obstacles. In a weird way, I forced myself to lean into the harshness of these realities, especially considering the work we are trying to do here. But let me tell you, the challenges a person faces with this disease are as rare as the diagnosis itself. Every day, they are faced with a new kind of pain, loss, and death; yet, at each turn, they talk about hope and making moments matter. Why was Tuesdays with Morrie so wildly successful? Morrie knew he would die, and Morrie had gratitude; he also had ALS.
ALS is final, not hopeful, and has no grace. It took away Steve's biggest pleasures in life one by one. But you see, Steve was the kind of guy who thought that he could be the first person to live with ALS. He would be the guy to beat it. That was just his personality. He and I had many conversations about treatment, even natural stuff that he normally wouldn’t have been into. Still, desperation can push a person to corners they never thought they'd go. I found myself obsessed with googling drugs and trials and hammering our friend Naama, who is a neuroscientist, to look up studies and clinical trials and translate them for us. But the clock was way too fast for us. And obviously, I couldn't google us out of his impending death, but when you're medically helpless, you google.
However, that feeling of helplessness has since been replaced with hope. We are continuing our quest to find something that can and will help individuals living with ALS by fundraising. It's what drives every second that we spend on Stevie Fever efforts. Over the past year, working with various individuals to increase the exposure of our foundation and raise money has been nothing short of amazing. Sarah Lopez and Heather Evans raised over $90,000 through their Buck-a-Puck campaign, while Tim Wightman raised over $5,000 with his Run For Stevie effort. Mark Brady and his friends threw a Dance Party at the Crooked Cue, drawing a massive crowd and selling all our merchandise. And now, we're about to run the first annual Stevie Fever Dance Party - the OG event that was discussed with Steve when he could still communicate.
"I just don't want you to do too much work on this," he'd said to me. I told him not to worry one bloody second about that. He simply cried into the receiver. "Okay." He had no fight left in him that didn't have to do with avoiding choking or getting himself safely to the bathroom. ALS doesn't chip away at ego, it wipes it out.
What he didn't realize at that point was that I would acquire his nieces to help plan and execute the event with me. I have had the absolute pleasure of working with Steve and Cory's nieces, Meghan, Colleen, and Ali. They are what I call Lady Bosses. They get shit done. No fuss, no muss. And they love their uncle. They are young and vibrant, full of life, but 100% aware of how unpredictable life can be.
And now, that is the fuel that fills the engine of this foundation. We're going to roll like Steve did: balls-to-the-wall fun, balls-to-the-wall effort.
We all just want a world where one day, ALS is a fight, not a bomb. So, let's dance for those who can't.