Michael Sapienza on Turning Personal Loss Into a Mission to End Colorectal Cancer

After losing his mother to colorectal cancer in 2009, Michael Sapienza turned unimaginable grief into action. Today, as CEO of the Colorectal Cancer Alliance, Sapienza has become one of the leading voices in colorectal cancer advocacy, working to improve screening, expand access to care and accelerate the development of new treatments for patients facing the disease.

In this conversation, Sapienza opens up about the painful experience that continues to fuel his mission years later.

“The vivid memory of the pain that I saw my mom in, and the many times she said, ‘Michael, I don’t want to die, I want to live,’ — it sticks with me,” he said.

Turning Grief Into Advocacy

Sapienza explained that before his mother’s diagnosis, he had no background in medicine or nonprofit work. But witnessing her battle with colorectal cancer changed the direction of his life completely.

“It’s really about the pain,” Sapienza said. “The pain of seeing a loved one — whether it’s a mom, a dad or someone in the prime of their life — go through this disease.”

Today, he channels that grief into advocacy through the Colorectal Cancer Alliance, where he focuses on improving prevention efforts, supporting patients and accelerating research for more effective treatments.

A major part of that work includes Project Cure CRC, an initiative designed to improve outcomes for metastatic colorectal cancer patients through clinical trials, patient-driven data collection and innovative research platforms.

“We need more treatments, we need more patients involved in those treatments, and we need the data to help support the ecosystem,” Sapienza said.

He noted that metastatic colorectal cancer still has a five-year survival rate of approximately 13%, a statistic he says must improve — especially as colorectal cancer becomes the leading cause of cancer-related death in men and women younger than 50.

Why Screening and Awareness Matter

Throughout the interview, Sapienza repeatedly stressed the importance of screening and symptom awareness, calling colorectal cancer one of the few cancers that is often preventable when detected early.

“If you’re 45 years old, you need to get screened at 45. Period. No exceptions,” he said. “My mom didn’t get screened, and she died.”

He also urged younger adults not to dismiss symptoms such as blood in the stool, unexplained weight loss, persistent cramping or changes in bowel habits.

“It doesn’t mean you have colorectal cancer,” Sapienza explained. “But it does mean you’ve got to take it seriously if those symptoms last for more than a few weeks.”

Sapienza added that patients should not be afraid to advocate for themselves if they feel their concerns are being overlooked.

“Doctors are amazing, but they’re busy,” he said. “Don’t be afraid to do your own research and ask questions.”

Breaking the Stigma Around Screening

Sapienza also discussed Lead From Behind, a national awareness campaign created in partnership with Ryan Reynolds and Maximum Effort to make conversations around colorectal cancer screening more approachable.

The campaign has featured celebrities and athletes including Dak Prescott and Katie Couric in an effort to normalize conversations around colonoscopies and stool-based testing while reducing stigma.

“The whole idea is to bring it into the mainstream,” Sapienza said. “We need to get everybody screened because we do have a preventable cancer.”

According to Sapienza, one of the campaign’s early initiatives led to a significant increase in colonoscopy orders, demonstrating the impact awareness campaigns can have when paired with recognizable voices and cultural moments.

A Mission Bigger Than One Family

As colorectal cancer rates continue rising in younger adults, Sapienza says the urgency to improve screening, expand access to care and develop better treatments has never been greater. For him, the work is no longer just professional — it is deeply personal. Every patient story, every family affected and every life lost serves as a reminder of why advocacy, awareness and research matter.

Through the Colorectal Cancer Alliance, Sapienza hopes to ensure more patients are diagnosed earlier, live longer and never feel alone while facing colorectal cancer.