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Father Fights for Funding to Save KBG Syndrome Lab

2/23/2026

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Story summary
  • Long Island father Andrew Jedlicka urges lawmakers to restore federal funding for the lab treating his son's KBG syndrome.
  • The lab offers a potential cure and faces closure on March 1 due to a funding lapse.
  • Senator Joni Ernst is delaying funding approval while seeking reforms to prevent misuse of taxpayer dollars.
  • Jedlicka plans to lobby in Washington to secure reauthorization and help families like his.