Children's Cause Gives Families a Voice in Pediatric Cancer Policy Debates

Arielle Beaulieu was just eight days old when she was diagnosed with an aggressive and typically fatal type of brain tumor. Her parents were stunned when the chief pediatric oncologist told them Arielle had no hope of survival.

But the Beaulieus didn’t give up. They had Arielle’s tumor biopsied and consulted with experts. Arielle survived six brain surgeries, a tumor relapse and a host of debilitating — but temporary – side effects from her disease and treatment.

Arielle beat the grim odds as today she is a thriving three-year-old survivor.

“Few are so lucky,” says Arielle’s mother Elizabeth. “There are less than 10 known survivors, and Arielle is the only one without any noticeable effect on her development.”

The Beaulieu family has been forever changed by their harrowing experience with childhood cancer. They are taking action to help create a better future for Arielle and for the 16,000 children who will be diagnosed with cancer this year. Elizabeth is sharing her family’s story to spread awareness, and now she’s taking it a step further by becoming a vocal advocate for policy progress through meeting with her legislators in Washington DC, this summer.

“We’ll have the chance to meet with our senators about the Childhood Cancer STAR Act, ask for better funding for children’s hospitals and advocate for children with medically complex needs,” Elizabeth says.

Mobilizing families like Elizabeth’s to engage with lawmakers is just one way Children’s Cause for Cancer Advocacy is helping families impacted by childhood cancer find their voice and fight for change.

This spring, Children’s Cause is launching the Kids Action Network (KAN), a new way for families and survivors to become informed and effective advocates. KAN advocates will be given the tools and tactics to become a strong and powerful network of childhood cancer champions, with opportunities to make their voices heard by decision-makers in Washington DC and state capitols.

“If nothing else, we have our voices. Our experiences and our stories can illustrate the battles that we’ve fought and the needs of kids who continue to suffer,” says George Dahlman, CEO of Children’s Cause. “Those are powerful weapons that can help move legislation, improve research, generate new treatments and improve survivorship.”

That’s the role of Children’s Cause: to help families be the agent of change for themselves and for others by amplifying the patient voice to leaders in Washington, state capitols, research labs, pharmaceutical companies and treatment centers. Since its founding in 1999, the Children’s Cause has filled a strategic national gap by focusing on policy and system improvements. The organization acts as a catalyst to stimulate pediatric drug discovery and development and to help ensure care for survivors of childhood and adolescent cancer, a population expected to reach 500,000 by 2020.

Although progress has been made, there is much more work to do for Children’s Cause and advocates like Arielle’s family. Childhood cancer remains the leading cause of death by disease for our nation’s children, and the health and well-being of childhood cancer survivors remains too fragile.

Today, Arielle loves to sing with her older brother and sister, dress up like Spiderman, and tend to her baby dolls.

“Arielle will receive scans into adulthood to watch for relapse, but her future looks bright,” her mother says. “Her survival is a miracle, and we hope to repay it by advocating for children with serious medical conditions."

The Children’s Cause shares in the Beaulieu family’s optimism. Despite the distractions of an election year, cancer research is a rare bipartisan issue experiencing a surge of recent support, buoyed by a new era of precision medicine. As the Children’s Cause continues to press for progress in pursuit of policies that can speed the development of more effective therapies and help normalize the lives of survivors, they invite you to join their new KAN network to help keep up the heat on policymakers.

Visit Children's Cause website to learn how to become part of this growing grassroots movement.