Spotlight On: Colontown
Colontown provides patients with colorectal cancer and their caregivers with a community and educational tools focused on the disease.
Twenty years ago, when Erica Hanson Brown was 58, she was diagnosed with late-stage colorectal cancer. She knew no one who could understand her situation, leaving her feeling alone and isolated while she battled her way through treatments. The loneliness Brown felt inspired her to create a place for patients with colorectal cancer, caregivers, and survivors to meet, communicate, and support each other.
On March 6, 2011, Brown created a Facebook group called Colontown and invited the people she knew who might be interested in joining, which was fewer than 20. Today, Brown is cancer-free and Colontown is an online community facilitated by Paltown, an organization devoted to creating safe, authentic spaces for patients and caregivers. There are over 120 Facebook groups in the Colontown community.
Its Goal Creating safe spaces, or “neighborhoods,” that reflect each age, stage, and step in the colorectal cancer journey both for patients and caregivers. To that end, Colontown consists of a collection of over 120 online neighborhoods, which are broken up based on a variety of factors — including age, gender, which stage of cancer a patient is in, and more. “Somebody who's a stage 4 patient doesn't really want to hear about a stage 1 person,” says Susan Wysoki, interim executive director of Paltown’s Development Foundation. “They're at a completely different stage in their cancer journey.”
Services It Provides Beyond support, Colontown offers a significant education in colorectal cancer through Colontown University — an educational resource for those diagnosed with colorectal cancer and their caregivers. Patients and caregivers alike can access Colontown University, even if they aren’t a Colontown resident, and get answers to the questions others in their situation have asked before.
Through Colontown University, anyone can get a better understanding about anything, from how to manage side effects and navigating clinical trials to the basics of colorectal cancer. Patients and caregivers can also find The Lecture Hall at Colontown University and watch a collection of videos featuring experts on colorectal cancer covering different topics within the disease.
“The scientific piece of the information that we provide is critical to what makes Colontown,” Wysoki says. “This is where people say they come to get really serious clinical and scientific information provided by patients and caregivers.”
Events Wysoki says that Paltown’s quarterly Empowered Patient Leaders Program gives Colontown residents an opportunity to play a more involved role in their Colontown communities.
“It's designed to bring through the next group of leaders from the community, so we're sourcing leadership from within the community,” Wysoki says.
Paltown also has a Clinical Trials Navigators program, which is focused on training participants on how to educate other patients and caregivers on clinical trials and the possibility of pursuing them as treatment options.
On an informal basis, Wysoki says that Colontown residents who are located in the same geographic area will often meet in person and socialize with one another.
Motto: Where hope meets science.
“We want people to be able to connect with the scientific resources to help them educate themselves and be their own best advocate in their own care journey by getting the support from other patients and caregivers who have walked the same path,” Wysoki says.