Meet an organization defined by out-of-the-box projects that inspire lifesaving dialogue and a thriving support community.
By Diana Price
When Molly McMaster was diagnosed with colon cancer on her twenty-third birthday, her doctor told her that she was the youngest person in the country to be diagnosed with her type of cancer. “I felt so alone and broken,” Molly says, remembering the pain of that time. The opportunity to connect with another young survivor, she says, was ultimately what pulled her out of the depths. “In an instant I had found a sister. Meeting her was one of the best things that happened to me during my own journey through cancer.”
That connection with fellow survivor Amanda Sherwood-Roberts, who was 24 at the time, would also prove to be the inspiration for what has become Molly’s passion: educating people about colorectal cancer and connecting young colon cancer survivors. “Amanda died at 27 after her cancer spread,” Molly says, describing how the women’s friendship fueled her desire to make a difference: “I was angry and sad and felt guilty, but then it all turned into inspiration. Amanda died and I didn’t. I felt that I owed it to her—and I still owe it to her every day—to continue raising awareness and hopefully saving lives. I couldn’t let her life, and death, be forgotten.”
In honor of her friend, Molly joined forces with Amanda’s cousin, Hannah Vogler, to found the Colon Club, dedicated to “educating as many people as possible, as early as possible, about colorectal cancer in interesting and out-of-the-box ways.” The co-founders’ hope is that by inspiring “colon talk” in people’s everyday lives, they can get the word out about risk factors and symptoms and encourage people to get screened at the appropriate time.
The “out-of-the-box” part of the organization’s strategy—which has included construction of a “Colossal Colon” (a 40-foot-long, 4-foot-tall, crawl-through replica of a human colon), for example—gets people talking, Molly says, and has the potential to open a dialogue about screening that can save lives. “Sure, there are people out there who don’t like it, but I can guarantee you that the ones who think it’s disgusting and won’t crawl through it are going to go home to their dinner table that night and tell their families about what they saw, thereby striking up that very difficult first conversation.”
The list of people who have received lifesaving screening after just that kind of experience is extensive—and includes Molly’s own neighbor: “When my new neighbor moved in across the street a few years ago, I went over to introduce myself one day while he was out watering his lawn. He said, ‘Yeah, I know who you are. I met you at the mall with your big colon last year. I told you that my uncle had polyps removed, and you told me that I had a family history and needed to get a colonoscopy. I did—and had polyps removed.” Each experience like that, Molly says, reaffirms her dedication to the organization’s mission.
In addition to projects like the Colossal Colon, the annual Colondar (a calendar featuring young people all diagnosed with colon cancer under the age of 50), and several fundraisers, the Colon Club hosts a very active message board on its Web site, www.colonclub.com.
“The majority of people who visit our message board are affected by the disease and are under the age of 50,” Molly says, “but not all. We have always said that we didn’t want anyone to feel unwelcome, especially since a certain organization once told me that I couldn’t speak on its behalf about colorectal cancer because I didn’t ‘fit the stereotype.’ I never want anyone to feel the way I felt when I heard those words.” The result, she says, is an online community of people affected by colon cancer in many different ways: “They are parents of young survivors, children of older folks, friends and family members of patients, and patients and survivors themselves. Some are newly diagnosed, some have had recurrences, and some are just now finding that they need support—or need to give support—even though they are nearly 10 years out from their original diagnosis.”
Having created a support network that allows colon cancer survivors and their loved ones to see that they are not alone, and continuing to spark conversations that can lead to lifesaving screening, Molly is proud of the work that she and Hannah have done to honor Amanda’s memory and make a difference. But she also knows that there is a long way to go: “In a perfect world—since colon cancer is 90 percent preventable—we could put the Colon Club out of business, which would be great! Unfortunately, people still don’t want to talk about their colons, so the Colon Club has plenty of work to do.” That work includes more crazy, eye-catching projects (the Rollin’ Colon—a new version of the Colossal Colon—will soon debut as a traveling exhibit) as well as further network building and fundraising.
Despite the work ahead, Molly’s dedication to the organization and to sharing her own experience remains unwavering. “Every time I get another phone call or another e-mail letting me know that I’ve lost another friend, I’m reminded of why we have the Colon Club and why we continue to do what we do. I’m so sick of losing people to a disease that is preventable and treatable when it’s caught early. If I can save more lives by telling my story, that’s what I’m going to keep doing.”
For more information visit www.colonclub.com.