Children’s Patient Family to Advocate on Capitol Hill

A patient family from Children’s Nebraska, the region’s pediatric health care leader, will attend the 19th annual Children’s Hospital Association Family Advocacy Day event, June 12-14, in Washington, D.C. Ten-year-old patient Emersyn Arterburn and her mother, Lori, from Grand Island, Neb., will attend this year’s visit to Capitol Hill.

A gathering of dozens of patient families from member hospitals and health care systems, Family Advocacy Day allows families to meet with members of Congress to advocate for important legislation that ensures access to high-quality pediatric health care. The duo will meet with U.S. Reps. Don Bacon, Mike Flood and Adrian Smith and Sens. Pete Ricketts and Deb Fischer from Nebraska’s congressional delegation.

The Arterburns will discuss investments to support strengthening Medicaid and the Children’s Health Insurance Program (CHIP), expanding mental health services for children and teens and increasing the pediatric health care workforce. They will share their family’s experiences and discuss the role Children’s Nebraska serves for communities across the region and the unique health challenges pediatric patient families face, all to help shape policy impacting children and families nationwide.

Diagnosed at 7 years old with medulloblastoma, a type of cancerous brain tumor, Emersyn bravely battled a nearly two-year course of treatment that included two surgeries, a full tumor resection, chemotherapy and radiation. She was seen by Children’s pediatric experts in Oncology, Neurology, Neurosurgery and more specialties, who provided compassionate care for Emersyn and her family. Emersyn’s final chemo treatment was completed in April 2023, celebrated with a ceremonial clap-out with her friends, family and care team.

“We are so excited to head to Washington, D.C., to advocate for kids just like Emersyn and families just like ours,” Lori Arterburn said. “Pediatric health care is incredibly important to me, and we are honored to speak in support of kids needing specialized care everywhere.”

The Arterburns have decided to share their story publicly, aiming to encourage Congress to strengthen the pediatric health care system so that all children have timely access to highly specialized care.

“We are grateful that the Arterburn family has chosen to share their deeply personal story and care experience at CHA Family Advocacy Day,” Children’s Nebraska President & CEO Chanda Chacón, MPH, FACHE, said. “We need lawmakers to hear the unique needs and experiences of pediatric patients and families, and this is an opportunity for discussion and understanding. Advocacy is part of Children’s mission to improve the life of every child, and pediatric health care plays a vital role in serving our communities.”

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