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“Tomorrow, together”: Chordoma patient’s email sparks 45,000 reasons for hope

“What we’ve learned over the years is that our events are successful because of people’s connection with Mick and his story."

Taking action

Note: In the year since this article was first published, the Potempa family has raised an incredible additional $50,000+ for the Chordoma Foundation. We are so grateful for their dedication!

It was a sunny Easter in Chicago this year, but Mick and Noreen Potempa had another reason to feel warm at their family egg hunt: For the first time since the start of the pandemic, the newly vaccinated couple enjoyed a holiday with four of their grandchildren.

Like many of us, 2020 gave the Potempa family a fresh appreciation for these once ordinary things. But for Mick and Noreen, the pandemic was just part of what informed a shift in perspective over the past year. Seven years after Mick was first diagnosed with chordoma, he experienced a second recurrence — a fight in which he’s still engaged.

Between Mick’s treatments and the pandemic, it would’ve been understandable for the Potempas to cancel their popular One in a Million benefit, which has raised hundreds of thousands of dollars for chordoma research and care over the past six years. “We knew we couldn’t do the same event as in the past, but we also knew that Mick’s future depends on treatments being available to him. Who better than us to make sure that research is funded?” says Noreen. “The pandemic gave everyone an opportunity to reflect on what’s really important in life. For me and Mick, that included continuing our commitment to fundraising for the Foundation.”

So the couple reimagined a scaled-back, virtual campaign. Mick and Noreen crafted a personal email to family and friends providing an update on Mick’s chordoma journey and explaining why a donation to the Foundation would be a meaningful show of support for the Potempas during their difficult year.

“Chordoma is a tough opponent. (I’d say it’s tougher than the Chicago Bears, but I guess that’s not saying much!),” Mick wrote in the letter. “In the years since chordoma became part of our vocabulary, the Chordoma Foundation has spearheaded progress in the search for new and better treatments. Please join us in supporting them.”

Mick and Noreen’s email campaign raised an amazing $45,000, funds that are directly supporting chordoma research and patient services. The Potempas were touched by the outpouring of support that stemmed from a simple email. “Not having seen people for the past year, you can feel disconnected. But this experience reminded us of the strength of our community,” says Noreen.

Chordoma Champions — people like the Potempas who rally their personal networks to fundraise for the Foundation — are often surprised at the number of individuals who show their support through a contribution. “Every chordoma patient has friends and family who’ll say, ‘What can I do? How can I help?’ Contributing to an effort like this is an opportunity for people to offer their loved one a better future — a tomorrow, together,” says Noreen.

“What we’ve learned over the years is that our events are successful because of people’s connection with Mick and his story,” she adds. “Mick inspires people to face life’s curve balls with a positive mental attitude. They see him in battle, never giving up. They see him living his best life and enjoying every moment he can. They have great admiration for his strength and determination in the face of so many challenges,” she says. “They’ve been on this journey alongside us, and they’re part of our team.”

Become a Chordoma Champion: Five steps to hosting an email fundraiser

The quest for better chordoma treatments depends on the initiative of each of us affected by this disease. It’s simpler than you think to contribute to the cause like Mick and Noreen:

1. Create a Champions page to share your chordoma story.

Be the first to make a donation — this’ll encourage others.

2. Email your link to friends, family, neighbors, and colleagues.

Explain why supporting the Foundation is meaningful to you, and ask them to make a donation.

3. Share your Champions link on social media, too.

Tell your followers why a donation to your campaign would be appreciated.

4. A week or two later, repeat steps two and three.

Update your loved ones about your campaign progress and remind them why their support is important to you.

5. Celebrate your success!

Thank your supporters for helping you speed the path to better treatments, better care, and better experiences for everyone affected by chordoma.

We hope you’ll join our growing community of Chordoma Champions.

Ways to help

We know chordoma is a solvable problem. How fast it gets solved depends on the contributions of every one of us affected: whether by donating, hosting a fundraiser, or participating in research. There are lots of opportunities for each of us affected by chordoma to fuel research advances that will dramatically improve treatments and outcomes.

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