Spotlight On: Colorectal Cancer Alliance

In response, they created the Colon Cancer Alliance, and 40 members held their first meeting in March of 1999 in Washington, DC. For about 10 years, the group served as volunteers to advocate for research and provide resources for patients with CRC. As they continued to grow and expand through the early 2000s, another group was starting: Chris4Life Colon Cancer Foundation.

Chris4Life was founded by the family of Michael Sapienza, who lost his mother to colon cancer on Mother’s Day 2009. This loss spurred his family to establish an organization to further colon cancer research and treatment, and to provide support for those living with the diagnosis. Chris4Life grew quickly, but Sapienza felt frustration at their relatively small budget when other cancer organizations had hundreds of millions in funding. “So I thought, we've got to do something and we’ve got to do something now,” says Sapienza.

In 2014, Sapienza met leaders from the Colon Cancer Alliance through his advocacy efforts with Chris4Life, and in January 2016, the two organizations merged, creating the Colorectal Cancer Alliance. “Now, about eight and a half years later, we are a $34 million organization and growing,” says Sapienza. At the time of merging, the Alliance had 40 staff, but they now have 50 — the largest nonprofit team in the United States.

The goals of the Colorectal Cancer Alliance include raising the colorectal cancer screening rate to 80 percent, improving the five-year survival rate of metastatic colorectal cancer to 35 percent, and investing $500 million in colorectal cancer research. They are striving to meet these goals through LEAD FROM BEHIND, a screening awareness initiative, and Project Cure CRC, which launched in 2023 with a $100 million commitment to end colorectal cancer. Project Cure CRC involves four strategies: direct funding, a patient portal, data collection, and clinical trial protocols.

Direct funding allows the Alliance to award grants for CRC research. “Last year, we funded $10.5 million in grants, and this year, our plan is to award $20 million,” says Sapienza. “We've given close to 30 grants totaling about $12 million in that short amount of time, which is incredible. It's the largest philanthropic investment in CRC outside of the federal government.”

In addition to research funding, the Colorectal Cancer Alliance offers access to BlueHQ, a comprehensive patient portal that provides diagnosis-specific information and resources. “BlueHQ helps patients feel like they're not alone,” says Sapienza. Beyond community connection, members can also find clinical trials, financial resources, and access to patient and caregiver navigators.

With members’ permission, data from BlueHQ and various research projects are being gathered in a database called Blue Lake. To approve new treatments, the U.S. Food and Drug Administration (FDA) needs patient data, which Blue Lake will be able to offer. With more data, new colorectal cancer treatments can become available much faster, and at a lower cost.

The fourth arm of Project Cure CRC is the launch of K-SPY, which is in the planning stage. K-SPY is an adaptive clinical trial platform aimed at transforming colorectal cancer care through personalized treatments, faster access to therapies, and improved outcomes. This clinical trial platform uses one master protocol to test multiple treatments, which can speed up the research process. Similar to I-SPY for breast cancer and Beat AML for acute myeloid leukemia, K-SPY will allow patients to get on to multiple clinical trials at once, says Sapienza. “We can quickly see results, which will bring successful trials to market much, much faster.”

The Colorectal Cancer Alliance provides dozens of vital services for anyone with colorectal cancer. As described above, their BlueHQ patient support hub provides reliable, personalized information, useful tools, and a supportive community. If you’d like one-on-one support during your colorectal cancer journey, you can reach out to their live navigator helpline for expert advice.

Cancer expenses can add up quickly, and the Colorectal Cancer Alliance provides financial assistance for those who need funds for childcare, transportation, and food.

For information on colorectal cancer symptoms, diagnosis, and treatments, they have a vast library to explore. You can also read about others’ experiences with various aspects of colorectal cancer in their resource library.

The Alliance hosts an expansive community of people with colorectal cancer and their friends and family. Anyone can join their online communities, like their private Facebook support group, Blue Hope Nation. They’re also active on every major social media platform, including Instagram, LinkedIn, X, TikTok, and YouTube.

Through their Buddy Program, the Alliance matches you with another CRC survivor or caregiver with similar experiences, so you don’t have to face your diagnosis alone. You can also join their daily community chat from 12 to 1 p.m. Eastern Standard Time (EST), a My Pals Grief chat on Wednesday nights from 7 to 8 p.m. EST, and a peer-to-peer support chat for stage 4 patients every Tuesday night from 7 to 9 p.m. EST.

For young-onset CRC, the Colorectal Cancer Alliance offers age-specific support, including for issues like fertility preservation, intimacy and sexual health, and financial toxicity.

The Colorectal Cancer Alliance hosts events throughout the year aimed toward awareness, advocacy, and fundraising. They organize walks/runs across the country, and also host an annual National Blue Hope Bash, a gala that unites generous allies and has raised millions to end colorectal cancer. The Alliance offers ways for everyone to get involved, spread education and raise funds through its End Colon Cancer Coast to Coast initiative.

To contact the Alliance, you can submit a form online, or if you’d like to speak with a certified patient and family support navigator, you can call their live helpline at 877-422-2030.

“We want to find new treatments for patients to help them live longer, healthier lives,” says Sapienza, who expressed a feeling of urgency in funding research to end colorectal cancer. “Even if we had a billion dollars today, we wouldn't be able to completely prevent it with screening,” says Sapienza, adding that it takes time to develop treatments and shape prevention policy.