Taking children’s voices to Capitol Hill: Akron Children’s participates in Family Advocacy Day

Levi Buxman and his parents visited with Ohio lawmakers during his recent trip to Washington, D.C. for Family Advocacy Day.

When lawmakers make decisions about healthcare policy, conversations often center on budgets, legislation and funding. Family Advocacy Day helps bring those discussions back to what matters most: the children and families whose lives are directly affected by those decisions.

“Family Advocacy Day, hosted by the Children’s Hospital Association, brings together patients and families from children’s hospitals across the country to advocate for pediatric healthcare on behalf of their hospitals,” said Michael Wellendorf, government relations manager at Akron Children’s. “During this event, participants travel to Washington, D.C., to share their personal stories with members of Congress and highlight the vital role children’s hospitals play in their communities.”

Family Advocacy Day brings together patients and families from children’s hospitals across the country to advocate for pediatric healthcare on behalf of their hospitals.

When families become advocates

Representing Akron Children’s this year were Lauren and Brandon Buxman and their son, Levi, who joined hospital leaders in meetings with U.S. Rep. Michael Rulli, U.S. Sen. Jon Husted, U.S. Rep. Max Miller and U.S. Rep. Emilia Sykes.

Levi, age 12, was recently declared cancer free after a two-and-a-half-year battle with B cell acute lymphoblastic leukemia.

For Michael, having families tell their own stories is what makes the event so impactful.

“They are uniquely positioned to speak to the impact of the services, care, support and expertise that surrounded them throughout their journey – offering a powerful, firsthand perspective on the importance of pediatric healthcare,” he said.

Levi spent over two and a half years battling B cell acute lymphoblastic leukemia.

Connecting personal stories to policy

During their meetings, Akron Children’s focused on several key issues that directly affect the care children receive.

Among them was Medicaid, which provides healthcare coverage for approximately half of Ohio’s children. The team also discussed the Children’s Hospital Graduate Medical Education (CHGME) program, which helps train the next generation of pediatricians and pediatric specialists but requires annual congressional reappropriation.

Another priority was the federal 340B program, which helps hospitals provide specialty medications to patients at reduced costs.

Rather than leading with policy details, the conversations began with personal experiences.

“We connect each patient and family’s story to the policy issues that are critical to Akron Children’s,” Michael said.

Recently Levi had a clap-out ceremony and bell ringing, signifying his end of treatment.

A family’s story that resonated

The Buxmans brought more than facts and figures to Washington. They brought the reality of navigating a child’s complex medical journey.

“Lauren and Brandon are incredible advocates, not only for Levi but also throughout the care he received at Akron Children’s,” Michael said. “They have faced and navigated decisions that many parents never have to consider, and they were able to communicate those experiences to policymakers in a way that truly resonates.”

Levi also made a memorable impression.

“Levi is just remarkable and full of life, with a great sense of humor, and a natural ability to make everyone around him feel special,” said Katie Semo, Akron Children’s government relations specialist, who was also on the trip. “That warmth was evident in his interactions with the U.S. Representatives he met, leaving a lasting impression on each of them.”

During meetings, Lauren shared details about the challenges their family faced throughout Levi’s treatment and care. Levi contributed his own perspective, including stories about friends he met along the way.

“Lauren shared their story, and some of the tough situations they experienced,” Katie said. “Levi chimed in with his own stories and experiences, like that of his friend Liam who unfortunately passed last year while in treatment.”

Levi waiting to meet with Congressman Max Miller.

A memorable moment

One of the highlights of the trip came during the meeting with Sen. Husted when Levi – a huge Michael Jackson fan – moonwalked for him.

The moment offered a reminder that beyond policy discussions, Family Advocacy Day is about building personal connections and helping elected officials understand the children and families affected by their decisions.

During meetings, Lauren shared details about the challenges their family faced throughout Levi’s treatment and care. Levi contributed his own perspective, including stories about friends he met along the way.

Advocacy that makes a difference

While the meetings last only a short time, the relationships and stories often stay with policymakers long after they return home.

“We always stress to elected officials that their constituents are our patients, and we have a shared responsibility to act upon their best interests,” Michael said.

He believes families like the Buxmans play an important role in helping lawmakers understand what’s at stake.

“U.S. Representatives deeply value the opportunity to meet these children and hear about their extraordinary journeys,” he said. “Their stories and their presence bring a powerful human perspective to the conversation. When a family advocates for our hospital, policymakers are more likely to remember that child and the care they received when making critical decisions about Medicaid, CHGME funding and 340B.”

The trip included plenty of memorable moments, from seeing Washington’s landmarks to visiting the National History Museum (the mummies and Dexter the monkey were favorites). But for the Buxmans, Family Advocacy Day was ultimately about something bigger: making their voices heard and helping shape policies that ensure children have access to the care they need now and in the future.