2020 Rare Disease Champion Team: Learn more about Northwestern defensive tackle Joe Spivak and what his inspiration means to a rare disease patient


Joe Spivak

University: Northwestern University

Vitals: 6-0, 300 pounds, senior, defensive lineman

Quick Hits: 2020: A natural leader, Joe was a three-time captain in high school, becoming the first sophomore football player chosen as a captain at Esmark High School in Chicago. Joe has appeared in 36 games for the Wildcats since his true freshman year in 2017, including 22 the last two seasons. He made his first career start at defensive tackle against Iowa in the second game of the 2020 season and went on to start the next nine games for the Wildcats during their run to a Big Ten West crown and a second appearance in the conference title game in the last three years. In the Citrus Bowl victory over Auburn, Joe notched his first career solo sack. The two-time Academic All-Big Ten selection is a leader on so many fronts, and has brought his intense passion and purpose to the Rare Disease Community by serving as a leader in the Northwestern Chapter of Uplifting Athletes since 2018. He continues to serve as the Vice President of the chapter and is using his platform to make a difference in the lives of patients across the country.

RARE IMPACT FROM THE VOICE OF A RARE DISEASE PATIENT

“The week Northwestern football was preparing for its 2020 Big Ten Championship game against Ohio State I was getting some surprising and devastating news, I stopped responding to treatments.

This is one of every rare or chronic illness patient’s worst fear. We have so little options to begin with that we consider it almost a miracle when something works. So, to hear that my already limited pool of therapeutics had shrunk further was a true gut punch. But I was really looking forward to the game. It had now become not only a chance to root for my team, but a much-needed distraction.

It was Thursday of championship week and my phone rings. On the other end is none other than a couple of Northwestern players I have come to admire, Joe Spivak and Pete Snodgrass. They were checking in with me, to see how I was doing.

When I assured Joe that if they were busy, they could put off the call until after the season he told me, “Marni, we will always find time to talk to you.” I bet you are wondering what ultra-inspiring conversation we had?

We talked about smoking meat. Yup, that is right we talked about different types of smokers and what meats you can use them for. We also talked about future goals, but mostly, smoking meats.

Why do I share this? It’s simple, it shows two sides of Joe Spivak. The side that puts other people first and made sure that the week of his big game a rare disease patient knew she was still thought of, and the side that is just genuine and has you laughing so hard as he ponders what meat he can come up with to try and smoke.

In the Rare Disease Community, we are used to people caring about us who have a connection to the space. But I met Joe when he reached out to me, a total stranger, to learn about the rare disease experience.

When he realized how I was struggling, he kept that relationship going and encouraged me to push past the shadows and to fight the disease consuming my body. He never once gave up on me and made me realize I am more than this disease. With his support I took the steps to see what my body really was capable of.

I started working with a physical therapist and strength coach and the girl who couldn’t walk around the block without her cane can now jog. I was told by several doctors to accept that my arm was a loss, the disease too far gone in ravaging it. Before the Wildcats’ 2020 season I couldn’t lift it past shoulder height and that was with excruciating pain. Now, I have close to full range. 

Sometimes there are so many voices in the world telling you “you can’t” it becomes suffocating. Hearing a stranger tell you “I believe you can”, can be the most powerful tool you have.

It becomes the voice that echoes in your mind when you have those “bad” disease days, curled up in a ball on the floor screaming in pain. It becomes the words that get you through the doctor’s appointments where they tell you news you were dreading, and it becomes the voice you make the loudest when those other voices begin to bombard you.

Joe Spivak is whose voice is in my head.”

Marni Cartelli

WHAT THEY SAID

“I love football… but even more than that, I love the relationships that football has brought into my life. I believe that Uplifting Athletes is extending these unbreakable bonds into a community that needs them more than ever. To be able to serve as an example and extension of family to rare disease patients and families is what is really awesome!” – Joe Spivak

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