Joey Porrello Presented with Jenifer Estess Award

“None of us would be here without Jenifer Estess. Yes, sure, there are countless other factors that brought us together today. Personally, having ALS jumps out as my big one. But without Jenifer, Project ALS doesn’t exist. One person, alongside her two sisters, decided 25 years ago to use her own ultimate misfortune to take this whole nasty disease on. These three sisters had no business, or qualifications per se, to do so. Talk about ambitious, borderline insane. Yet, here we are. Jenifer’s spirit and vision enduring, Valerie and Meredith still tenacious as ever. I believe Jenifer was, and is, key to the cure and it’s a privilege to be part of her legacy. Just seeing my name next to Jenifer’s is an absolute honor. I’m a man with ALS. There’s tens of thousands of us out there. What makes me unique, is you. Every one of you. I’m incredibly fortunate to have so many people care, some who I’d like to acknowledge:

My wife, Alli. The only one who sees it all. The demand, physically and emotionally, of juggling this shifting reality are extreme. But she is a FORCE. All things feel possible with her. My children, Otti and Walter. While not aware, sustain my will to live just through the twinkle in their eyes. My parents, Mom and Dad, lifelong examples of putting others before yourself. Who encouraged, guided, and shaped me. My brother Andrew, sister Sarah and her boyfriend Scott, and my Aunt Tammie who are always ready and eager to spring into action. The rest of my family and the various ways you support us. Jimmy and Molly, who have treated us as family and don’t seem to know the word “no.” Ambassadors of thoughtfulness, compassion, and selflessness. All those that have amplified my voice and elevated my story: my former civil engineering firm (Kimley-Horn), the local ALS Association (Dawn, Steve, Georges, and Susie), Project ALS (Valerie, Meredith, Margot, and Erin), my growing list of local partners, the entertainers here, and my friends old and new. Make no mistake, this is a team award. Please, applaud for the people around you. 

I know I said we have Jenifer to thank for being here, but that’s not totally true. Love brought and keeps us together. Love extends beyond any one person. You can give recklessly without consequence. Nothing is too difficult. We can push on indefinitely. Love changes the world. It is what founded and fuels Project ALS, and inspires my life. 

I’ve had to confront things that most people never do. Much less before they’re 30. Giving up a beloved career, losing my ability to speak, letting go of the fatherhood I’d imagined, impending total paralysis, a complete loss of independence. Really makes you evaluate life. My constructs such as self-worth, personal fulfillment, and purpose were challenged. Ideas that will make you question your existence.

Well, when I imagined my future as a so called vegetable, the answers were simple. Worth is inherent in life. Not something created. Fulfillment is attainable solely through celebrating others. A lot more victories when cheering for more teams than your own. I do not fear my future, for I am witness to all of yours. Especially my kids. And purpose? Does it really matter? It is a freaking miracle to experience this glorious existence! There’s no need to figure out the “trick” in the magic show of life. Bask in the wonder and mystery. I’ve detached my quality of life from what I can physically do. I am strong, resilient, and joyful in doing so. I am prepared for anything – except to curl up and die. 

Our obligation extends beyond just showing up. You’ve got to participate. The most impactful thing we can do in life is to use our abilities and privileges to improve others. That alone amounts to a meaningful life. That is my mission, my motivator, my reason to fight. It can never be taken away from me. It is an act of love.

As we know, love conquers all. Including ALS.”

-Joey Porrello

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