The Bumgarner family represented CHoR at 2025 Family Advocacy Day
Nearly 7 months after 14-year-old Ben Bumgarner became the first CHoR patient to receive a novel gene transfer therapy for Duchenne muscular dystrophy, he continues to make a positive impact on the future of children’s health care. Ben joined CHoR leaders and kids from across the country in Washington, D.C. last week for Children’s Hospital Association’s Family Advocacy Day, putting a face and voice to policies that impact millions of children.
Kids advocating for each other at Family Advocacy Day
Children’s Hospital Association brings more than 200 member hospitals and organizations together to improve children’s health care and overall health. A big part of this involves advocating for access to quality, cost-effective health care for all kids.
Each summer, member hospitals invite patients and their families to Family Advocacy Day for an opportunity to share their stories with lawmakers on Capitol Hill. This year marked the 20th Family Advocacy Day event and the Bumgarner family – Ben, his mom Beth, sister Ace and service dog Divina – represented CHoR. During their day on the Hill, they visited the offices of Senators Kaine and Warner, along with Representatives McClellan and Wittman.
Families from other children’s hospitals met with lawmakers representing their home states and districts. Ben appreciated the opportunity to share his story with his representatives and meet other kids with disabilities working toward the same goals.
Personal perspectives on policies impacting children’s health
This year’s coordinated advocacy topics included the:
- Shortage of trained professionals to meet the unique health care needs of children
- Prevention of proposals that could jeopardize children’s access to care
- Role of Medicaid and CHIP in providing health insurance for nearly half of U.S. children
- Mental, emotional and behavioral health emergency facing kids and teens
Families were also encouraged to share their stories and the other health concerns important to them. That’s what made the Bumgarners the perfect fit. Ben spoke to his personal experiences living with a condition that requires coordinated care based on the latest clinical developments.
“We enjoyed educating our representatives about Ben’s complex medical needs and allowing them to put a face and a personal story with asks to protect and strengthen Medicaid,” said Beth. “Meeting with elected officials makes a lot of people, including adults, nervous. I teared up watching my kids rise to the challenge. Ben confidently advocated for himself and his big sister, Ace, told our family’s story with eloquence. I think they made a memorable team!”
Meanwhile, Beth is no stranger to advocating for optimal access, treatment, research and care for her son and others facing similar health journeys. As one of the Parent Project Muscular Dystrophy coordinators for the state of Virginia, she participates in an annual advocacy conference and other ongoing efforts to make sure Duchenne muscular dystrophy and the people impacted by it remain at the forefront for Congressional leaders.
Dr. Jeniece Roane, vice president of operations at CHoR, joined Ben and his family on the visits.
“Children are at the center of all we do. As the region's only hospital dedicated to providing primary, tertiary and quaternary care for children, legislative advocacy is one of the important ways we work to improve children's health care,” she said. “It was my honor to advocate for policies that impact access to care, mental health support and research funding for children alongside Ben and his family.”
A fun, meaningful and memorable experience
Family Advocacy Day wasn’t all work. From a science fair to dinners and family activities at the hotel, attendees were encouraged to soak in the unique opportunity to meet new friends while making a difference.
Keep up with the latest health care happenings for kids on our blog.