Chordoma Foundation

Community fundraising in the age of COVID

In the spring of 2019, John Mainey and his family gathered friends and supporters across multiple states for the Warriors Against Chordoma Golf Tournament and Hoops Challenge in Austin, Texas. Both events were held in celebration and memory of his son, Chuck, an athlete and sports fan who battled chordoma for 15 years before losing his life to the disease in 2014. Together, they raised an impressive $20,000 for chordoma research and patient care, an outcome that surprised and delighted the Maineys.

The collective joy and impact of the 2019 events prompted John and his family to recreate them in April of 2020. They had already booked a venue and sponsors when COVID-19 came to the United States and, as John put it, “all heck broke loose.” It was decided at the time that the in-person events would be postponed until October, but as summer crept in and the cases of the novel coronavirus increased, the Maineys made the difficult choice to shelve the 2020 event altogether for the safety of participants.

Once the decision had been made to table the event until 2021, John reached out to Kenny Brighton, our Head of Philanthropy, who inquired whether John might be willing to consider participating in a small letter-writing campaign instead. John, never one to do anything halfway, considered Kenny’s request and thought to himself, “I can do better than that.”

Recalling a step challenge he’d participated in a few years prior, John decided to hit the pavement running (literally!) and shifted gears to create a new virtual fundraising event called “Steppin’ Out for Chordoma.” It will take place this weekend, on Saturday, October 10.

Inspired by the fact that Chuck would have turned 40 this year, John challenged himself to train for a 40,000-step walk-a-thon in his neighborhood in North Carolina, one thousand steps for each of Chuck’s birthdays.

But even THAT didn’t seem like enough to the incomparable John. So he upped the ante and added 28,000 steps to his goal, to account for the difference between Chuck’s age (40) and his own (68), bringing the step total up to 68,000 – about 34 miles.

Once his goal was set, John emailed and Facebooked friends and family to share his plan – walking 68,000 steps in one day to raise money for better treatments and care for all those affected by chordoma. He was determined to match the $20,000 his family’s events had raised the previous year and invited his followers to pledge what they could, noting that with as little as 29 cents per step they could help him to meet his goal and improve the lives of countless patients and families. He also invited them to follow along on October 10 as he shares live updates of his walk on Facebook, rain or shine.

To-date, more than 50 donors have already pledged more than $9,400 to the cause, and the donations continue to roll in. Though some are from chordoma community members, many are old friends and colleagues of the Maineys whom John hasn’t seen in years. After reading about the fundraiser on Facebook, they were more than happy to pitch in to support the Foundation and their old friend.

John Mainey Steppin Out for Chordoma

It’s not in my nature to deal with tough times by just hunkering down and not looking up. That’s an easy way out. What would happen if the Foundation said hey we’re not going to help our patients or do research for the year because it’s harder? That default position doesn’t work. Chordoma won’t stop and neither will they, so I’m leaning in and I hope you will too.”

John Mainey

father of chordoma patient Chuck Mainey

If you’re interested in following John’s journey on October 10th or pitching in, check out the Warriors Against Chordoma Facebook Page

Adapting to our new reality

As the world continues to grapple with the short and long-term effects of COVID-19, adaptability is key – in our personal lives, in our professional lives, and even in our philanthropy. We at the Foundation appreciate that these unprecedented times have created roadblocks none of us could have expected, and we continue to be deeply grateful and encouraged by our community members for standing with us as we forge ahead toward better treatments and better experiences for everyone affected by chordoma.

It’s the ingenuity and perseverance of folks like John that will help ensure the momentum we’ve gained in science and patient care won’t be slowed. Where others saw barriers, the Maineys saw a hurdle – one that, with a little training, they could easily get over.

And the fantastic thing about the chordoma community is that they’re not alone. We’re a community with experience tackling unexpected obstacles, like the ones Steven Mandel, member of the Foundation’s Board of Directors and captain of #TeamChordoma, has dealt with over the last eight years.

After surviving a near-fatal car accident by a hit-and-run driver in New York City, the doctors overseeing Steven’s rehabilitation discovered a chordoma at the base of his spine. Through the Foundation, Steven connected with a qualified care team, had a successful surgery, and got back on his feet. Shortly thereafter, he set an audacious goal. He would return to his pre-accident/pre-cancer physical condition and do it while helping the Chordoma Foundation. For his first challenge, in 2014, Steven ran a half-marathon. He invited his two best friends to join him at the race and turned it into a fundraising event. And so #TeamChordoma was born. In the years since, thanks to Steven’s energetic leadership, #TeamChordoma has continued to grow, running six races and raising more than $350,000 for chordoma research and care.

But when the 2020 Brooklyn Half Marathon was cancelled due to COVID this past May, Steven redirected his efforts into the #5kfor5. Rather than inviting people to come to Brooklyn for the race (as he had in years past), he invited anyone who wished to support the team to complete a 5K at home (by running, walking or cycling), donate any multiple of five to the #TeamChordoma campaign and nominate five other people to participate. This quick pivot yielded great results, raising $10,000 for the Foundation early on in the pandemic.

#TeamChordoma #5kfor5

While we are disheartened to not be able to run physically together as a group this year, #TeamChordoma adapted to the current circumstances and made the most out of our virtual #5kfor5. The virtual effort allowed us to reach a wider group of participants with lower physical barriers to our traditional half marathon event. We plan to re-ignite the virtual effort later in the year and look forward to hitting the pavement together again next year.”

Steven Mandel

chordoma patient and CF Board Member

Turning passion into action

Steven and John are just two examples of chordoma community members turning their passion into action during the pandemic. 

If you planned an in-person fundraiser that was cancelled due to COVID, or if you’ve been thinking about hosting a virtual fundraiser but aren’t sure where to start, we’re here to help.

Reach out to Kenny Brighton (kennybrighton@chordomafoundation.org), Head of Philanthropy, to discuss your event ideas and learn about the fundraising support services available through the Chordoma Foundation.



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