A Long Island dad fighting to save the only research lab that he says can treat his 5-year-old son’s rare genetic disorder has finally won his battle with Congress.
House Speaker Mike Johnson on Friday signed the long-stalled bipartisan Small Business Innovation Research Act to free up funding for the Queens lab treating Merrick resident Andrew Jedlicka’s son — sending the bill to President Trump’s desk for hopefully final passage.
“I’m relieved that it finally reached the president’s desk, and I hope that it is signed into law very soon so that we can continue the great work we’re doing for the KBG community,” Jedlicka told The Post
Jedlicka’s son, who has not been identified at his father’s request, was diagnosed last year with KBG syndrome — an extremely rare genetic disorder linked to developmental delays, speech issues and seizures.
There are only about 800 known cases worldwide, though experts believe the disorder is underdiagnosed.
The bill, if signed into law, would provide crucial funds to dozens of small businesses and research labs across the country conducting cutting-edge medical research, including the Long Island City lab that Jedlicka’s son has been receiving an experimental treatment at for the last five months.
The lab, located in Queens, is the only one in the world capable of not only treating his 5-year-old son’s disorder, but possibly curing it all together, Jedlicka said.
But the lab’s future hinges on that renewed federal funding from the Small Business Innovation Research program, which lapsed in October 2025 after Congress failed to reauthorize it, multiple stalemated negotiations, and now continues to be held up without the President’s signature.
“If the lab closes, everything stops, and we don’t get the cure,” Jedlicka, an NYU business professor who has already spent hundreds of thousands of dollars of his own money on the treatment, previously told The Post.
Long Island Rep. Laura Gillen said she had been urging Johnson to push the bill to the president.
She wrote to the speaker Wednesday desperately pleading for him to move it along.
“I’m proud to have helped push this funding for vital medical research through Congress after months of a partisan stalemate in the Senate and weeks of inaction by the speaker of the House,” said Gillen, previously calling the funding “vital” and declaring the delay was costing lives.
The bill, passed by the Senate on March 3 and the House on March 17, awaited Johnson’s signature and remained unsigned for weeks until Gillen’s push just two days before the speaker signed off Friday.
“Every day that passed without a reauthorization of this funding threatened to end lifesaving treatment for Long Islanders and others across the country. This legislation now moves one step closer to saving the medical breakthroughs and innovations they rely on,” the congresswoman added.
The total cost of Jedlicka’s son’s treatment at the center is more than $1.2 million. The lab would roughly need about a million more dollars on top of that just to stay afloat, and without the federal funding, Jedlicka said he would be responsible for every penny.
The bill now awaits either Trump’s signature or veto, with Jedlicka hoping for the best in the face of uncertainty as the president’s 2027 budget proposal includes a plethora of cuts to federal health and research funding.
House Speaker Johnson nor The White House responded to The Post’s requests for comment.