An unexpected champion: Jeff Schilling's story

4/15/22 — A message from our Executive Director, Josh Sommer:

All of us at the Chordoma Foundation were deeply saddened to learn that Jeff Schilling passed away this morning. As you’ll read in this article from last year, Jeff’s contributions to the chordoma community cannot be overstated. His tremendous generosity and active participation in our shared mission over the years had a positive impact on the lives of countless other chordoma patients. We will miss Jeff very much, and we’re keeping his family and friends in our thoughts during this difficult time.

Jeff Schilling never expected to be the kind of person who openly shared his experiences with cancer, and he certainly never planned to do it in front of an entire bowling alley full of people. When Jeff was first diagnosed with chordoma 18 years ago, he didn’t even want to talk about it. At 25 years old, he wasn’t about to let the fact that he had a rare cancer define him or change how people saw him.

But after six recurrences and a host of setbacks — from misdiagnoses to surgical complications to clinical trials delayed by COVID — he’s found himself, to his surprise, willingly playing an invaluable role as a chordoma connector and fundraiser. Though chordoma is by no means Jeff’s identity, he’s embraced the ways his experience has allowed him to drive meaningful change for himself and others.

"It’s not in my nature to dwell on things, so, early on, I decided not to devote much time reading what the internet had to say about chordoma. Instead, I focused my energy on the people and activities that mattered most to me – becoming a husband and dad, growing my career, and staying connected to friends. Yet somehow, through just putting two feet on the ground and moving forward, I ended up getting the chance to make a difference in a way I never thought I would."

Jeff Schilling, chordoma patient

Jeff’s friends and family were the ones who first convinced him to begin hosting fundraisers for the Chordoma Foundation 13 years ago. At the time, he’d already been through a series of challenging surgeries and radiation treatments to address his initial tumor and first recurrence. Those surgeries brought the first of numerous complications — including a cerebrospinal fluid leak and meningitis — that have marked his journey with the disease. But even through difficult recoveries, Jeff’s quality of life remained stable, and he continued attending golf weekends with college buddies and other social activities with friends and family.

Their enthusiasm for the cause and eagerness to help convinced Jeff to give fundraising for chordoma a try. Back then, information about the disease was scarce (and scary!), and treatment options were minimal. They’d hoped that, together, they could help make a dent in the Foundation’s search for better medicines and the growing efforts to support patients like Jeff. They were right.

“In 2008, five couple friends, including my wife Erin and I, started a bowl-a-thon at our local alley in Kansas City and invited some friends to take over a few lanes for the cause. At our last in-person event in 2019, we had 11 co-hosting couples and sold out the entire alley with over 300 people, many in standing room only. It’s become a thing we all look forward to.” – Jeff Schilling

Jeff Schilling and friends at their 12th Annual Blockbuster Bowling Benefit in 2019

Though Jeff initially avoided playing such a visible role, once he started co-hosting fundraising events like the annual bowl-a-thon and, later, a yearly golf tournament (which he runs alongside fellow survivor Maggie Bates), it felt so good to be proactive and was so much easier to pull off than he thought, that he just kept going. One of his biggest surprises along the way was how supporting the Foundation became the thing that reconnected him with his friends rather than making him feel disconnected.

Through four additional recurrences, the birth of his daughters, a burgeoning IT career, and coaching stints on two little league teams, Jeff has kept up with his annual fundraising events. Even when the pandemic forced a cancellation of the 2020 bowl-a-thon and golf tournament, Jeff and his co-hosts adapted and created an online fundraiser instead, hosting a virtual tailgate party and auction for the Kansas City Chiefs’ game against the Denver Broncos.

“When I finally allowed myself to acknowledge the role that the people in my life wanted to play and accepted their offers of help, everything blossomed. I particularly like that my friends and family who have supported the Chordoma Foundation over the years get to see first-hand the difference they are making in real-time; and they seem to love it as well.” – Jeff Schilling

Since launching their fundraising efforts, Jeff and his crew have seen the opening of multiple clinical trials, the creation of new surgical approaches that benefited him directly and the expansion of education and navigation support services that have helped hundreds of families like his each year.

“As I undergo treatment for my sixth recurrence, I’m reminded of the most important lesson my wife ever taught me. Life doesn’t come with a guarantee, and no one knows what tomorrow will bring. But a strong mindset is one of the most powerful tools we can deploy so rather than dwell – on this recurrence, the pandemic, or anything else – I choose to act, and I hope you’ll join me.” – Jeff Schilling

We are incredibly grateful for the support that Jeff, Erin, and their whole family have provided over the years. The Foundation’s progress is entirely dependent on the generosity of our community of supporters, and as scientific discovery, drug development, and patient support accelerate, your support is critical to keep the momentum going.

There’s no “right” way to support the Chordoma Foundation – only what’s right for you.

Whether it’s volunteering, making a donation, participating in a fundraiser or hosting one, every contribution of time or money makes a difference. None of us can do it alone, but together we can improve lives and find a cure.