{"database": "press", "table": "releases", "rows": [["https://bilirakis.house.gov/media/press-releases/bilirakis-applauds-expansion-newborn-screening-highlights-beacham-familys", "Bilirakis Applauds Expansion of Newborn Screening, Highlights Beacham Family\u2019s Story", "2025-12-16", "2025", "2025-12", "Republican", "House", "FL", "Gus M. Bilirakis", "B001257", "bilirakis.house.gov", "bilirakis", "https://bilirakis.house.gov/media/press-releases", "scraper", "WASHINGTON, D.C. \u2014 Congressman Gus Bilirakis (R-FL), Co-Chair of the Congressional Rare Disease Caucus, today praised the U.S. Department of Health and Human Services\u2019 decision to add Duchenne Muscular Dystrophy (DMD) and Metachromatic Leukodystrophy (MLD) to the Recommended Uniform Screening Panel (RUSP), underscoring the importance of early diagnosis for children and families across the nation. Congressman Bilirakis joined HHS Secretary Robert F. Kennedy, Jr., fellow Members of Congress, patient advocates, and families at today\u2019s announcement, including the Beacham family and their daughter, Mattie, whose personal journey illustrates the life-changing impact of early newborn screening.\n\n\u201cI was proud to attend today\u2019s compassionate announcement by Secretary Kennedy,\u201d said Congressman Bilirakis. \u201cAs Co-Chair of the Congressional Rare Disease Caucus, I have worked for years to expand newborn screening so that no child suffers because of a lack of diagnosis. This action will help ensure earlier diagnoses, better treatments, and more hope for families\u2014while also advancing research and innovation for rare diseases.\u201d\n\nBilirakis emphasized the significance of the Beacham family\u2019s participation and the powerful reminder their story provides.\n\n\u201cI was especially honored to stand with the Beacham family and their daughter, Mattie,\u201d Bilirakis continued. \u201cMattie\u2019s story underscores exactly why this issue matters. If her rare disease had been diagnosed at birth, she could have avoided much of the pain she has endured in her short life. No family should have to wonder \u2018what if,\u2019 and no child should have to suffer unnecessarily because a diagnosis came too late.\u201d\n\nDMD and MLD are often not diagnosed until children are four or five years old, after irreversible damage has already occurred. Adding these conditions to the RUSP will give families critical answers at birth, allowing children to access FDA-approved therapies at the most effective stage and potentially change the course of their lives.\n\n\u201cThis decision represents a monumental step forward rooted in compassion and science,\u201d Bilirakis said. \u201cI want to ensure children like Mattie have the best possible start in life. Early screening can mean the difference between years of uncertainty and pain, and a future filled with timely care, informed decisions, and hope.\u201d\n\nThe RUSP serves as a federal recommendation for universal newborn screening, with states determining implementation. Congressman Bilirakis encouraged states to move swiftly to adopt the new screenings and reaffirmed his commitment to advocating for children and families affected by rare diseases.", 1, "2026-04-04T05:28:40Z", "2026-04-04T05:30:10Z"]], "columns": ["url", "title", "date", "year", "month", "party", "chamber", "state", "member_name", "bioguide_id", "domain", "scraper", "source", "date_source", "text", "has_text", "collected_at", "updated_at"], "primary_keys": ["url"], "primary_key_values": ["https://bilirakis.house.gov/media/press-releases/bilirakis-applauds-expansion-newborn-screening-highlights-beacham-familys"], "units": {}, "query_ms": 0.7349471561610699, "source": "dwillis/congress-press", "source_url": "https://github.com/dwillis/congress-press", "license": "MIT", "license_url": "https://github.com/dwillis/congress-press/blob/main/LICENSE"}