To carry on the light, legacy and desire to bring awareness to childhood cancer of her late daughter, Jennifer Berry has traveled across the nation to advocate for childhood cancer initiatives.

At the age of 14, Caroline Berry was diagnosed with Stage 4 Alveolar Rhabdomyosarcoma, an aggressive sarcoma that targets soft muscle and connective tissues. The teenager and student at Spanish Fort High School would learn one year later the cancer had spread to her brain and was advanced. Throughout her two-year battle, Caroline went through a year of IV chemotherapy, oral chemotherapies, 20 fractions of radiation to multiple sites in her body, cyberknife radiation to the brain, brain radiation therapy and six surgeries.

Despite the challenges, the young girl stood strong, fighting for not only herself but for other children who experienced childhood cancer.

Berry founded the Berry Strong Foundation, raising over $175,000 toward critical childhood cancer research. For the past five years, Berry has traveled to Washington D.C., collaborating with senators and congressmen during Action Days to advocate for increased childhood cancer funding.

Action Days is a two-day-in-person event where attendees learn about policy and legislative strategy and speak with influential politicians and advocates and express their legislative priorities to policymakers.

On Feb. 14, Berry traveled to Washington D.C. and joined over 200 advocates, including nearly 50 from St. Baldrick’s, representing 22 states and Washington, D.C.

“When we go to D.C., we are working on making sure that childhood cancer is still in the forefront,” Berry said. “We are making sure that we are still receiving full funding for some programs, and they are able to be carried out ad implemented in the way they are supposed to be.”

During the Action Days, they highlighted the bipartisan need for policy responses to childhood cancer, regardless of age, disease type or treatment status.

Some of the asks that were brought up to Congress include: support increased funding for medical research through the National Institutes of Health and National Cancer Institute, provide full funding for federal childhood cancer programs, including the Childhood Cancer Data Initiative and the Childhood Cancer STAR Act, and cosponsor the Accelerating Kids’ Access to Care Act.

“There are mothers there who have lost their children. There are survivors and people who are still going through active treatment,” Berry said. “It is really impactful to have that whole representation. As you’re meeting with your lawmakers and congressmen, it puts a face with what we are really asking for.”

The STAR Act was passed in 2018 and allows the National Cancer Institute to help gather and grow samples from kids and young adults diagnosed with cancer. This builds on the existing NCI-supported efforts in collecting and studying biological samples.

Once a budget is approved in D.C., the senators and members of Congress will review the requests brought forth by Berry and other advocates.

Berry noted that advocating and traveling to another state to speak in front of people is something that would typically put her out of her comfort zone. However, she looks to her daughter for the motivation.

“It was not until Caroline passed away that I really realized that’s exactly what she was doing,” she said. “I think, ‘If she can find that strength as a 16-year-old girl who is fighting cancer, then I can get it together and go.’ It is so rewarding to be sharing her story.”