The Original Relentless Champion

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Champion Stories
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It was 1996 and Nancy Roach’s mother-in- law had just been diagnosed with stage II rectal cancer. Roach found herself doing what many patients and caregivers still do today— logging online and looking for resources, answers, and hope.

She quickly found a group of smart, committed patients and caregivers who weren’t only sharing ideas and tips about treatment, they were pursuing ways to get colorectal cancer into a bigger spotlight. Treatment options were lacking and research funding fell short.

The group’s passion eventually spilled over from online gatherings to in-person meetings. Soon, they founded the Colon Cancer Alliance (CCA) in 1999. Tasked with leading advocacy efforts for the CCA, but clueless about what advocacy meant, Roach spent a few weeks in D.C. learning from a lobbyist. He taught her the D.C. landscape and how to boldly enter a congressional office and respectfully apply pressure. The education transformed Roach into a relentless advocate.

“I saw the difference a group can make because if you have people who understand how to put pressure on political, health care, and research systems, you can make a difference for not just one patient, but all patients,” said Roach.

As the CCA began expanding its programs and offering more direct patient support, Roach’s heart became set on advocacy. She wanted to make a difference. She
began working alongside the Food and Drug Administration (FDA) on compassionate use and expanded access. Because there was no one else talking about policy and research around colorectal cancer, she stayed involved with groups like Once Voice Against Cancer and the National Cancer Institute (NCI), pushing them to make decisions on behalf of colon and rectal cancer patients.

Frequently traveling coast-to-coast from her Seattle-area home to the D.C. area, she soon realized that people touched by colorectal cancer needed an army of voices to promote change. Her one voice needed to be amplified. After securing financial support from three sponsors, she established C3: Colorectal Cancer Coalition on March 14, 2005. This would evolve into the Fight CRC of today.

70,000 Champions Strong

Nancy Roach founded Fight CRC in 2005 with three sponsors and a handful of supporters. Today, we are THE nation’s leading advocacy organization with more than 70,000 champions actively engaged in advocacy, research, and/or patient education.

Staff, board members, and advocates slowly began joining C3, which was renamed Fight Colorectal Cancer in 2011. With Roach serving as Board Chair, both the organization and her influence grew. Committed to the initial vision of watching policy and research work together, Roach stayed laser-focused on research advocacy. She laid the framework for the Research Advocacy Training and Support (RATS) program and continued networking throughout D.C. agencies. Anything she could do, she did, like volunteering on countless grant review panels, co-authoring papers, and attending scientific meetings, all to share the patient perspective. A prominent “squeaky wheel” during a 10-year project with the NCI, she supported efforts to transform the clinical trials system in the United States.

“When I started Fight CRC, my goal was to have personalized, curative treatment for every single person diagnosed with colorectal cancer and a $2 non-invasive, very accurate screening test. The goal of everything we do is to push the system in that direction, but the system’s not set up to go in that direction. So, this means we push all the time, constantly,” said Roach.

Fixing What’s Broken

To understand the fire that fueled Roach’s advocacy, one needs to know the notorious “binder story.” Roach tells it like this:

“I knew that a Progress Review Group for colorectal cancer had met, but I hadn’t seen anything come out of it. So, when I was in D.C. in 2004, I made an appointment at the NCI to get updated. I walked into the office and asked, ‘Where’s the report? What happened to it?’ and a man pointed to a binder on his bookshelf and said, ‘It’s right there.’ That pissed me off. I decided right then and there to start Fight CRC because if we had been in place then, the Progress Review Group would have been implemented in a much more robust way.”

For 15 years now, advocates like Roach have refused to back down, applying immense pressure to fix broken systems impacting colorectal cancer patients. Fight CRC has supported efforts such as training advocates at Call-on Congress to advocate for funding research and demand equal access to care, awarding millions of dollars in Kickstarter research projects, and convening experts in immunotherapy and early-age onset colorectal cancer research.

As a direct result of Fight CRC’s pushing, the Department of Defense (DoD) now funds colorectal cancer research, more patients are searching for and enrolling in clinical trials, Congress has passed legislation to fix insurance loopholes and remove barriers to screening, and dozens of Fight CRC advocates are well-respected and sitting on influential research committees within the scientific community.

“When my mother-in-law was diagnosed in 1996, there was only one drug available for treatment, Fluorouracil, or 5-FU. More chemotherapies were approved in the late 90s, and since then, there have been even more. Now, there are over 15 drugs available for people with metastatic colorectal cancer! Patients can cycle through combinations and live a lot longer. Some patients’ tumors can be cured, or they can live with long-term, stable disease. There are miracle stories coming out of research. This is what I always wanted to see. Now the question is how to take what’s working and apply it to all patients. This is where we go from here,” said Roach.

Torch Passing

All great leaders know sustainability takes change and growth. One flame isn’t enough to keep a fire going; others’ flames must catch on too. Today, Roach’s vision of raising an army of advocates is happening. Thousands of relentless champions
of hope are following in her footsteps. We know that being relentless means facing obstacles. It means not giving up when roadblocks appear. It means channeling our personal frustrations over unjust systems into advocacy, just like Roach did, and letting that passion transform into fuel.

Fight CRC is fortunate to have been led by a founder who has never wavered from wanting to change lives by getting personal. However, her own personal life has undergone quite a few changes. Her inspirational mother-in-law passed away in 2019, but a bundle of joy in fall 2020 helped soothe the pain. As a new grandma, Roach has caught a fresh vision for her life and she is heading in a new direction. This means she is passing the role of Board Chair to someone else and slowing down her advocacy efforts.

“My grandchild gives me a different way of looking at life, knowing I have a new generation moving forward,” said Roach. “I want to tell him that you don’t have to die if you get colorectal cancer, it can be caught early, and if it’s not, there’s a cure for you and everyone diagnosed.”

Our Fight CRC family will forever be grateful for the 15 years of relentless passion and purposeful leadership from Roach. She has changed the trajectory of the colorectal cancer community. Although we will miss having her flame leading our charge, we’re excited to see her experience something few others get to do: watch her legacy unfold.

Meet the New Board Chair

Dr. Angela (Angie) Nicholas connected with Fight CRC through her husband, John MacLeod, who was a stage IV colorectal cancer fighter, as well as a Fight CRC Board Member and Ambassador. She attended this year’s Cologuard Classic and will continue to attend in honor of John.

Dr. Nicholas discussing her involvement with Fight CRC and the Cologuard Classic

Beyond Blue Magazine

Read more stories of legacy in the latest issue of Beyond Blue!

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