A Sister’s Legacy Becomes a National Movement
In 2005, a woman named Kristen Linquist lost her sister Suzie to young-onset colorectal cancer. Suzie had been active in the running community in Seattle, Washington, and Kristen wanted to honor her memory in a way that felt authentic to who Suzie had been.
So she started a Get Your Rear in Gear team for one of the marathons in the area.
When she moved to Minneapolis, Minnesota, she decided to bring that spirit with her and approached a local running club: “I want to do this in honor of my sister.”
That first event in 2005 was one of the earliest awareness runs dedicated to colorectal cancer in the country.
People from Texas and North Carolina saw what Kristen had done and reached out: “I saw what you did in the Twin Cities. I want to do that here.”
What started as one woman’s grief, transformed into purpose, became the Colon Cancer Coalition, now with approximately 40 Get Your Rear in Gear events across North America each year in most U.S. states and the Bahamas.
But more importantly, it became a blueprint for how advocacy can work when it’s built on community, not top-down directives.
What Advocacy Actually Means
Erin Peterson, Senior Director of Mission and Partnerships for the Colon Cancer Coalition, defines advocacy in a way that cuts through the jargon:
“For us, advocacy means empowering patients to be advocates for themselves, educating each other, educating other people and their family. Really giving patients the resources and the information that they need to make a difference in their lives and the lives of people around them.”
It’s not complicated. It’s not corporate-speak. It’s simply: help people help themselves, so they can help others.
This philosophy isn’t something the Colon Cancer Coalition imposed from above. It’s what naturally emerged from the organization’s founding.
How Advocacy Grows Organically
Here’s what makes the Colon Cancer Coalition unique: they don’t pick cities and launch programs. They wait for advocates to raise their hands.
“We don’t go out and say, ‘Hey, we don’t have an event in Orlando. We want to start.’ We have a volunteer from Orlando come to us and say, ‘I want to do this in honor of someone,’” Erin explains.
In Orlando’s case, Ashley lost a friend and wanted to do something meaningful. She reached out to the coalition. They partnered with her. The Orlando Get Your Rear in Gear event was born.
This approach, letting advocates drive expansion rather than corporate strategy, has led to something remarkable: a truly decentralized national movement where local communities own their events and their missions.
The organization’s growth isn’t measured in top-down expansion. It’s measured in the number of people raising their hands to say, “I want to do this too.”
The Evolution of a Volunteer-Led Organization
When the organization first started, it was straightforward: local event directors and their committees in each city running one event per year.
Over time, it evolved into something much broader.
“What started as our local event directors has become an embracing community for colorectal cancer people on all stages of the journey,” Erin says. “Whether it’s a newly diagnosed patient, someone currently in treatment, a multi-year survivor, caregivers who have lost people, even providers who have seen how colorectal cancer can devastate a family or community.”
The advocacy work expanded too. It’s no longer just about running events. The Colon Cancer Coalition now partners with health centers to fund screening programs, ensuring people have access to follow-up colonoscopies after positive stool-based tests. They work with providers and educators across the spectrum.
“Our advocates are who we are,” Erin emphasizes. “We wouldn’t be here without them. They are the lifeblood of who the Colon Cancer Coalition is.”
The Impossible Question: How Do You Measure Community Impact?
Every nonprofit executive knows the question: “How do you measure the impact?”
Erin gives a refreshingly honest answer: “I don’t know that I’d say we measure the impact of the advocacy program. What we do is very hard to quantify.”
She could claim X number of people screened, but that’s not how advocacy work actually functions. Instead, the coalition looks at:
Expanding footprint: New communities wanting to join, either through Get Your Rear in Gear or other events supporting the work
Stories and feedback: The narratives of lives changed, communities built, connections made
Sustained engagement: Teams and individuals returning year after year, bringing new members
“People want to be a part of who we are and what we’re doing. They see the community that we’ve built, and they see the way our volunteers and advocates act together in creating a sense of community, and they want to be part of that,” she says.
This is important for everyone doing advocacy work to hear: impact isn’t always quantifiable in the moment. Sometimes it’s measured in stories, in sustained engagement, in the pull of community that keeps people coming back.
The Twenty-Year Arc: When Impact Finally Shows Up
The Colon Cancer Coalition celebrated the 20-year anniversary of the Twin Cities Get Your Rear in Gear last year (2024).
At that event, teams and individuals who had been there since the beginning showed up. People said: “This is my 18th race. I was at the first one.” Or: “This is my third. We just had someone in our family diagnosed.”
Some hadn’t missed a single event in twenty years. Others had drifted away and then returned. But they all came back for community.
And there’s something else happening that won’t be fully measurable for years:
Awareness from an early age that colorectal cancer screening is important. When a 15-year-old, 18-year-old, 25-year-old, or 40-year-old hears messages about screening from the Colon Cancer Coalition, they’re receiving education that sticks. Then, when they hit 45 and become eligible for screening, that awareness converts to action.
Similarly, when people hear early and often that “blood in your stool is not normal,” they’re more likely to get symptoms evaluated early, potentially catching cancer before it spreads, or preventing it entirely by removing precancerous polyps.
“Those messages, if we start telling people early, hopefully some of those stick around and can have a lasting impact on families and community,” Erin says.
This is the invisible impact of advocacy work: the seeds planted today that germinate into healthier choices and earlier diagnoses ten or twenty years later.
The Unique Power of a 5K Run/Walk Event
What makes Get Your Rear in Gear work so well as an advocacy vehicle?
It creates multiple layers of impact:
Immediate community building: Spouses who have lost loved ones, newly diagnosed patients, survivors, friends, and family all gather in one place with a unified purpose.
Accessibility: You can run, walk, or participate any way you want. There’s no barrier to entry other than showing up.
Human connection: “People that wouldn’t be connected get connected,” Erin explains. “They may only see each other every year at the race, but they have conversations standing in line at the water tent or reading a t-shirt and making a conversation. It’s really powerful.”
Sustained engagement: Because it’s an annual event in each community, people build the habit of returning. That consistency matters.
Funding for local work: Each event raises money that stays in that community to fund screening programs, education, and patient navigation services.
The Real Barriers to Screening That Money Could Fix
If resources were unlimited, Erin’s dream for the Colon Cancer Coalition would be to make screening available for everyone.
And that’s not just about the colonoscopy itself.
Most people don’t realize the barriers to screening:
Transportation: You can’t drive yourself to a colonoscopy. You can’t take an Uber or taxi. You need someone to stay with you the entire time. If you don’t have access to reliable transportation or someone who can take time off work, you can’t get screened.
Childcare: Someone needs to watch your kids while you’re at the appointment and during recovery.
Work time off: You might need time off for the appointment itself, the bowel prep the day before, and recovery time after.
Bowel prep costs: The medications used to prepare your colon for the procedure aren’t always covered. Some doctors require over-the-counter options. Some patients can’t afford the copays.
Copays: The screening itself might have copays that low-income patients can’t afford.
Patient navigation: There are people in clinics, not doctors, not nurses, who answer questions, schedule appointments, troubleshoot when something goes wrong. These patient navigators are crucial, and many clinics lack funding to employ them.
All of these are solvable problems. They’re not medical barriers. They’re economic and logistical barriers.
“If resources were no object,” Erin says, “I would fund all of that—transportation, childcare, time off work, bowel prep costs, copays, patient navigators. Because colorectal cancer is unique: we can prevent it from happening.”
The Prevention Story That Sets Colorectal Cancer Apart
Here’s what makes colorectal cancer different from almost every other cancer:
We can prevent it.
With a colonoscopy, we can find and remove precancerous polyps before they ever become cancer. With emerging non-invasive screening methods, we can identify adenomas early and intervene.
“Colorectal cancer has a unique opportunity to prevent all of that from happening,” Erin says. “A patient doesn’t have to go through chemotherapy, immunotherapy, and the treatment process.”
This is why the Colon Cancer Coalition’s focus on screening is so powerful. It’s not just about earlier diagnosis (though that matters). It’s about prevention entirely.
Yet many people don’t know this. Some physicians don’t even know the screening age is now 45, not 50.
Imagine if every American knew that colorectal cancer is preventable. Imagine if the message was as ubiquitous as “Get Your Rear in Gear” making it a household term.
Building Community One Race at a Time
When you go to a Get Your Rear in Gear event, you’re participating in something bigger than a 5K.
You’re joining a 20-year-old movement built by people who refused to let grief be the end of their story. You’re part of a community where spouses who lost partners can connect with each other. Where newly diagnosed patients can see that others have walked this path. Where providers can see the human impact of the disease they’re treating.
You’re also participating in advocacy work that doesn’t feel like work, it feels like community, fitness, purpose, and connection.
“It’s one of the reasons I keep doing what I’m doing,” Erin says, talking about the connections forged at these events.
What Erin Wants You to Know
If you live in a community with a Get Your Rear in Gear event, go. If you don’t, consider starting one.
If you’re 45 or older, get screened for colorectal cancer, not because you’re sick, but because screening can prevent sickness.
If you work in healthcare or public health, know that the barriers to screening often have nothing to do with medicine. They have to do with transportation, money, childcare, and access.
And if you’re thinking about getting involved in advocacy but aren’t sure where to start, remember how the Colon Cancer Coalition began: with one person who wanted to honor someone she loved, combined with a running community that already existed. The organization didn’t try to invent the wheel. It used what was already there and gave it purpose.
Connect With the Colon Cancer Coalition
If you want to learn more about the Colon Cancer Coalition or the Get Your Rear in Gear events happening near you:
Website: coloncoloncancercoalition.org
Social Media: Colon Cancer Coalition on Facebook and Instagram
Email Erin directly: erin@coloncancercoalition.org
Find your local event: Visit the website for the 40 Get Your Rear in Gear events across North America
If you’re interested in learning more about turning your own health journey into purpose and impact, subscribe to this Substack. Subscribers will be alerted first about the upcoming release of From Patient to Advocate: Turning Pain Into Purpose, coming this March for Colorectal Cancer Awareness Month.
