LI dad fighting to find cure for son’s rare disorder wins congressional battle
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By Brandon Cruz
Published on April 3, 2026.
Long Island Congressman, Mike Johnson, has signed the bipartisan Small Business Innovation Research Act to free up funding for the only research lab in the world that he believes can treat his son's rare genetic disorder, KBG syndrome. The bill, if signed into law, would provide crucial funds for dozens of small businesses and research labs across the country. However, it continues to be held up without the President's signature. Long Island Rep. Laura Gillen had been urging Johnson to act after months of a partisan stalemate in the Senate and weeks of inaction by the speaker of the House. The cost of the lab's treatment at the center is more than $1.2 million, and without the federal funding, Jedlicka would be responsible for all costs.
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