Welcome to Advocacy in Action, our monthly blog where our Fight CRC Advocacy Team discusses all things advocacy: from important policy updates, to ways to get involved, and behind-the-scenes views on how we make change happen. This month, Meet the Advocacy Team!

Meet the Advocacy Team Members

At Fight CRC, we know that it takes passionate, relentless people to advocate. We know that advocacy leads to impactful policy change that will help bring us closer to a world without colorectal cancer. This month in Advocacy in Action, we’ll meet the Advocacy Team and learn why they are proud to support and empower this community of relentless champions of hope in the fight against colorectal cancer.

Erin Darbouze, MPH, Health Policy Manager, joined the Fight CRC team in August 2021.

“My focus is on Fight CRC’s federal policy and advocacy efforts. More specifically, I am on the ground in Washington, D.C., where I meet with federal government officials, attend various health policy events, connect with other advocacy organizations and potential partners, and generally work to elevate both Fight CRC and colorectal cancer policy in Washington.

"I am able to use the knowledge and connections from my time in the U.S. House of Representatives and at the Raben Group (public policy firm) to effectively educate, raise awareness, and get policy influencers (different from instagram influencers lol) fired up about the issues facing the colorectal cancer community. Just like our relentless advocates, I share my personal story along with the issues we are advocating for. 

"Our stories drive us to be advocates and our stories inspire and motivate those in power to take action. I have always loved government, policy, and law, which is why I studied political science and came to Washington, D.C. However, the passing of my mother and father, both from colorectal cancer, is what made me a fighter and an advocate.”

Olivia Henswel, Advocacy Project Manager

Olivia Henswel, Advocacy Project Manager, is the newest member of the team, coming aboard in January 2022 and immediately immersing herself in March Colorectal Cancer Awareness Month planning.

“Planning, organizing, and helping execute the many ongoing Advocacy Team projects, campaigns, and events is my main focus.

"From Flex Your Vote to State Proclamations to action alerts, I ensure that our team stays on track in getting information and resources to advocates. I also oversee all the logistics for Call-on Congress. From United in Blue through Lobby Day, I work to ensure the community has all the information and materials they need, so they can confidently push for meaningful policy change. I also handle the logistical side, so that all boots can hit the ground running when they arrive in Washington, D.C.

"Before joining Fight CRC, I worked in sales, where I developed a passion for finding solutions to drive results and building meaningful relationships. As Advocacy Project Manager, I continue to build on this passion. One of the most gratifying parts of my position is the connections I’ve made and will continue to make at Fight CRC. Together, we are making change, and we are making a difference.”

What Does the Advocacy Team Do?

At Fight CRC, our advocacy work takes a lot of different forms, and while it would be impossible to capture everything in one blog post, here are some highlights:

• Perhaps our most notable advocacy program is Call-on Congress where we bring advocates from across the country to Washington, D.C., in March to meet with their members of Congress. 
• Last year, in conjunction with Call-on Congress, we launched United in Blue, the first-ever flag installation on the National Mall that brought awareness to the growing number of young people being diagnosed with colorectal cancer.

Advance Policy All Year Round

Fight CRC also has our Catalyst State-by-State Advocacy Program, which supports state coalitions working to advance policy to increase access to colorectal cancer screening. 

We helped multiple states pass legislation to ensure patients have access to colorectal cancer screening at age 45 and to remove out-of-pocket costs for patients needing a colonoscopy after a positive noninvasive screening test. 

Consistently, Fight CRC keeps advocacy going all year round through campaigns such as Flex Your Vote, where we provide resources to make sure advocates are ready to go to the polls; and State Proclamations, where we encourage people to submit proclamations to their governors to declare March as Colorectal Cancer Awareness Month. 

By constantly monitoring what is happening in state capitols and in Washington, D.C., our team can be sure to make our colorectal cancer community aware of policies that could impact them. And when it is time to raise our voices, we create action alerts to provide advocates with the opportunity to weigh in with their elected officials.

Teach People How to Advocate

It’s also important to note that we teach people how to advocate. We do this by helping prepare advocates to engage with their elected officials. You don’t have to be a policy expert because you are an expert in your own story and that is powerful! 

Through toolkits and resources, and access to our advocacy mentors, we make sure that you have all the tools you need to tweet, email, call, or meet directly with your elected officials.

Ensure the CRC Community Voice Is Heard

The Advocacy Team also does a lot of behind-the-scenes work to ensure that the voice of the colorectal cancer community is heard in Washington, D.C., and beyond. 

We attend conferences to educate and raise awareness about colorectal cancer. Also, we create partnerships with other advocacy organizations to help advance our policy goals. And we develop relationships with elected officials to create additional relentless champions for colorectal cancer.

Convene a White House Meeting

This year, the incredible advocacy of our community got us to the White House! We had the opportunity to bring together leaders from the business and advocacy community to meet with staff from the White House, National Cancer Institute, Centers for Medicare and Medicaid Services, and the Centers for Disease Control and Prevention to discuss ways we can work together in support of the President’s Cancer Moonshot efforts. And that work continues!

The Fight CRC Advocacy Team Members’ Connections

Each member of the Fight CRC Advocacy Team has connections or has made connections within the colorectal cancer community, which inspire them daily.

How did you each become involved with Fight CRC?

Molly:

"I first got involved with Fight CRC during my time on Capitol Hill. My former boss was a lead sponsor of the Removing Barriers to Colorectal Cancer Screening Act, a key legislative priority for Fight CRC. Later, I went on to become a consultant, and Fight CRC was my first client. Getting to work with the staff and the advocates more closely, I fell in love and was lucky enough to join the team full time shortly after."

Olivia:

"I decided to join the 2021 Climb for a Cure in Lake Tahoe, California. I was climbing next to survivors, caregivers, and families, listening to their stories. I left that trip knowing I wanted to join the Fight Colorectal Cancer family. Four months later I was onboarding, and now they can’t get rid of me."

What Makes Your Work at Fight CRC Imporant to You?

Molly:

"After the passing of my friend and former Fight CRC colleague, Julienne Gede Edwards in 2019, my passion for this cause only grew. I watched my friend, my peer, a vibrant and incredibly talented person in the same stage of life as me, navigate something no one — especially someone that age — should have to. That experience, along with the numerous other incredible advocates I’ve met since then, continues to drive me today."

Olivia:

"My work at Fight CRC is meaningful because I see firsthand the difference we make in the colorectal cancer community because of this community and within this community. I have met people through Fight CRC who have become family. Family looks out for and takes care of each other. Since I’ve started, we’ve been to the White House. I can see we are making progress, and that inspires me every day."

Is All of Your Work Based Out of D.C.?

Fight CRC’s advocacy work happens nationwide. Although we work on federal policy in Washington, D.C. we also engage in state policy efforts. We work with CRC advocates in all 50 states that participate in advocacy at the state and local level through our Catalyst State-by-State Advocacy program and our state proclamation efforts. 

Why Is Working with Fight CRC Advocates Meaningful?

Molly:

"Working with Fight CRC advocates is so special because they are powerful. They are consistently looking for ways to turn their pain into purpose, and we are honored to help them do that. All of the advocacy victories we have seen, all of the progress and advancements are because of advocates being willing to share their stories and push for change."

Olivia:

"Engaging with Fight CRC advocates is meaningful because it affords me the opportunity to team up with like-minded individuals who understand that using their voice can and will change the world. It’s humbling to watch our advocates strive to eliminate barriers and broaden access to much needed resources."

Why Is Advocacy Vital?

Molly:

"The reason advocacy is so important is because state and federal policy touches so many aspects of the cancer experience from healthcare coverage to medical research to treatment options and much more. Advocacy has the power to change what it means to receive a colorectal cancer diagnosis. Take the HIV/AIDS movement, for example. Patients, loved ones, and advocates rallied together to demand more and in a relatively short amount of time, an HIV/AIDS diagnosis went from a death sentence to a manageable, chronic condition. We have the power to make that happen for colorectal cancer."

Olivia:

"Advocacy is vital for so many reasons, for example the big picture, which includes addressing legislative and regulatory issues that affect cancer care and research. On a more granular level, advocacy raises public awareness around colorectal cancer and advances cancer research to support those currently living with cancer and improving quality of care."

Policy Change Takes Time: How Do You Stay Encouraged to Keep Fighting? How Do You Encourage Advocates to Keep Fighting?

Molly:

"Policy change comes in all shapes and sizes – getting a bill signed into law isn’t the only victory. At Fight CRC, we are constantly looking for ways to influence different policy levers that impact the lives of patients and caregivers. Also, sometimes impatience can be a virtue. Our elected officials need to understand the urgency of policy change around colorectal cancer. They need to know we can’t wait."

Olivia:

"Being surrounded every day by a team of colleagues, advocates, caregivers, and survivors who all have a common goal – and it’s a goal that keeps us fighting – is what keeps me passionate in the fight against colorectal cancer. The passion is unwavering. Collectively, we understand the need to support and encourage one another. The stories, the heartache, and the sadness encourages us to fight for a better tomorrow for those affected now and those that will be affected. Cancer doesn’t slow down and neither can we."

What Are Some Fight CRC Advocacy Victories?

Check out our Advocacy Victories blog post to read about current and past advocacy wins. We celebrate all advocacy victories because each win is one more step forward.

Make Your Personal Impact at Call-on Congress

Advocacy never ends. Get ready for Colorectal Cancer Awareness Month in March 2023 as Fight CRC heads back to Washington, D.C., for the first fully in-person Call-on Congress Lobby Day at the Capitol since March 2019. We’re excited for our United in Blue Rally and installation on the National Mall, in honor and memory of all our relentless champions of hope in the fight against colorectal cancer. Be sure to join us to meet with your members of Congress on Lobby Day!

Early-bird registration begins Tuesday, November 15, 2022, and ends January 1, 2023.