Chordoma Foundation

Chordoma fundraising in a virtual world

Get inspired and take action

Adaptability is a skill we’ve all had to sharpen over the past year; life in a pandemic is anything but business as usual. But coming together to adjust to new conditions and accomplish the improbable is something we in the chordoma community know how to do. So even when COVID-19 put unprecedented roadblocks in the way, Chordoma Champions individuals who rally their personal network to fundraise for the Foundation, directly supporting research and patient services — forged ahead. Our Champions broke through obstacles none of us could have expected with ingenuity and perseverance.

They found new and creative ways to educate friends and family about chordoma. They raised critical funds that enabled us to keep the momentum in research, treatment, and care not only going but accelerating. They proved that fundraising of all types can be impactful no matter how much time or energy fundraisers have to put into it. And, in most cases, they did it from their living rooms.

Thank you to the incredible individuals who moved on a dime to reimagine new and long-standing fundraising events for our socially-distant world, shifting online with amazing results and raising more than $1.6 million for chordoma research and care. The models you’ve built are ones we can all follow.

Get involved

The pandemic has slowed or stopped many things in our day-to-day lives, but chordoma is not one of them. That’s why it’s so important to maintain momentum in science and patient care to continue improving the quality of life and available treatment options for everyone affected.

By becoming a Chordoma Champion, you’ll help us accelerate new treatments and provide vital support to patients and families. Not sure where to start? Check out our virtual fundraising page to find tips and ideas about how to make an impact.

We’d love to provide you with one-on-one fundraising help. Contact to set up a time to chat.

95% of the way to our ALL IN campaign goal

For the first time, there is now a credible path to making chordoma a manageable disease — to treatments that don’t just slow the disease down, but that have a real chance of enabling patients to get on with their lives. With adequate investment, these treatments are years, not decades away. That’s why we launched the ALL IN capital campaign in 2019, to raise the $16 million dollars needed to accelerate this timeline toward better treatments and outcomes.

As of April 2021, we are 95% of the way to this goal, and your support can help put us over the top!

ALL IN campaign

Get inspired

Learn how fellow community members have created fun, engaging, and successful online events during the pandemic and what they are continuing to do to adapt the events to a virtual world.  

Noreen and Mick Potempa

One in a million letter-writing campaign (The Potempa family)

For Mick and Noreen Potempa, 2020 has been all about embracing hope and looking to the future. Seven years after Mick was first diagnosed with chordoma, he experienced his second recurrence, a fight in which he is still engaged. Between his treatments and the pandemic, the Potempas had to cancel their popular annual One in a Million event. But that didn’t stop them from rallying loved ones via email and social media to support the Foundation and helping bring hope and a future to everyone affected by chordoma.

Sue Brenneman, chordoma Peer Guide

Olde fashioned fundraiser (The Brenneman family)

While Sue Brenneman and her family were unable to host their annual Olde Fashioned Colonial Christmas Home Tour this year, the pandemic did not deter them from finding new ways to help improve lives and find a cure. They held a Facebook fundraiser and collected additional donations through their Champions page as well as offline from friends and family to keep the momentum going until they hopefully can bring everyone back to their lovingly restored home next Christmas.

Chuck and John Mainey

Steppin’ Out for Chordoma (The Mainey Family)

In the spring of 2020, John Mainey and his family realized they would not be able to host friends and supporters at their annual Warriors Against Chordoma Golf Tournament and Hoops Challenge in Austin, Texas, held in memory of John’s son, Chuck. At first the family postponed the events, but as cases of COVID-19 increased, they decided to cancel for the safety of participants. Not yet ready to throw in the towel, John reached out to our Head of Philanthropy, Kenny Brighton, who asked if the family would consider a small letter-writing campaign instead. Never one to do anything halfway, John thought to himself, “I can do better.” And he did! Recalling a step challenge he’d participated in a few years prior, John decided to hit the pavement (literally!) and shifted gears to create a new virtual fundraising event called “Steppin’ Out for Chordoma.” He set a goal of walking 68,000 – about 34 miles – in honor of Chuck, and took to Facebook and email to share his plan. The feedback was swift and positive. After live-streaming his walk on a rainy day in October, John exceeded his fundraising goal and has decided to host a second virtual event this spring, organizing teams from around the country to join him!

watching football

Virtual tailgate party (Jeff Schilling, Maggie Bates, and Priscilla McInnes)

Together, these three tenacious survivors and their families hosted a virtual tailgate for a Kansas City Chiefs football game. The event featured personal stories about their fight against chordoma, a cameo from a former Chiefs player and the team’s play-by-play announcer, an online auction and raffle, and a brief update on the Foundation’s work. This online alternative to their usual bowling tournament was fun, interactive, and incredibly successful.

For more ideas, tips, and inspiration,visit

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