Missouri committee hears emotional testimony for "June's Week" to spotlight rare pediatric disease
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Summary
Representative Mike Steinmeier introduced House Bill 17 56 to designate the first full week in September as June's Week (Rare Pediatric Disease Week). Multiple family members and witnesses urged support; the bill is a symbolic awareness designation and does not mandate funding. No opposition was recorded at the hearing.
Representative Mike Steinmeier (District 20) told the House Special Committee on Tourism that House Bill 17 56 was inspired by his family's experience after his granddaughter June received a diagnosis of a rare pediatric brain tumor. "This is a bill that was birthed out of a unique experience that our family had," Steinmeier said, recounting June's surgery and treatment and the family’s interactions with Children's Mercy and state offices.
Steinmeier read written testimony from family members. One excerpt read aloud stated: "I'm asking you to support June's week because behind every statistic about rare pediatric disease is a family living a nightmare they never saw coming." Another family statement described June's diagnosis as an "atypical teratoid rhabdoid tumor," explained that the bill would "designate the first full week in September as June's week and rare pediatric disease week in Missouri," and said the legislation "does not mandate action or funding." Steinmeier emphasized the bill's purpose is awareness, education and connection to support groups and resources.
Committee members praised the proposal and raised questions about timing and outreach. Representative Fountain Henderson asked why September was chosen rather than June; Steinmeier replied he selected September to avoid confusing the awareness week with the child's name and to emphasize the issue rather than the individual. Representative Ferretti urged broader advocacy, noting that "only 2 percent of all cancer research is dedicated and directed to pediatric cancer," and encouraged members to involve federal lawmakers.
Multiple witnesses spoke in favor. John Ruth of Jefferson City described barriers families face getting genetic diagnoses and the value of increased visibility. Tom Rackers, a long-time lobbyist, said awareness "is what it's all about." Matt Jesse, June's father, described June's life and the June Jesse Memorial Foundation, and noted June passed away 10 years ago on Feb. 4. Jesse said the foundation raises funds for families in similar situations and urged committee support.
No one testified in opposition, and the committee closed the hearing on House Bill 17 56 with the chair thanking witnesses. The transcript records no committee vote on the bill during the meeting.