A Lengthy Island dad combating to avoid wasting the one analysis lab that he says can deal with his 5-year-old son’s uncommon genetic dysfunction has lastly gained his battle with Congress.
Home Speaker Mike Johnson on Friday signed the long-stalled bipartisan Small Enterprise Innovation Analysis Act to release funding for the Queens lab treating Merrick resident Andrew Jedlicka’s son — sending the invoice to President Trump’s desk for hopefully remaining passage.
“I’m relieved that it lastly reached the president’s desk, and I hope that it’s signed into regulation very quickly in order that we will proceed the good work we’re doing for the KBG neighborhood,” Jedlicka instructed The Submit
Jedlicka’s son, who has not been recognized at his father’s request, was recognized final yr with KBG syndrome — an extraordinarily uncommon genetic dysfunction linked to developmental delays, speech points and seizures.
There are solely about 800 recognized instances worldwide, although consultants imagine the dysfunction is underdiagnosed.
The invoice, if signed into regulation, would supply essential funds to dozens of small companies and analysis labs throughout the nation conducting cutting-edge medical analysis, together with the Lengthy Island Metropolis lab that Jedlicka’s son has been receiving an experimental remedy at for the final 5 months.
The lab, positioned in Queens, is the one one on the earth able to not solely treating his 5-year-old son’s dysfunction, however presumably curing all of it collectively, Jedlicka mentioned.
However the lab’s future hinges on that renewed federal funding from the Small Enterprise Innovation Analysis program, which lapsed in October 2025 after Congress did not reauthorize it, a number of stalemated negotiations, and now continues to be held up with out the President’s signature.
“If the lab closes, all the pieces stops, and we don’t get the remedy,” Jedlicka, an NYU enterprise professor who has already spent tons of of hundreds of {dollars} of his personal cash on the remedy, beforehand instructed The Submit.
Lengthy Island Rep. Laura Gillen mentioned she had been urging Johnson to push the invoice to the president.
She wrote to the speaker Wednesday desperately pleading for him to maneuver it alongside.
“I’m proud to have helped push this funding for very important medical analysis via Congress after months of a partisan stalemate within the Senate and weeks of inaction by the speaker of the Home,” mentioned Gillen, beforehand calling the funding “very important” and declaring the delay was costing lives.
The invoice, handed by the Senate on March 3 and the Home on March 17, awaited Johnson’s signature and remained unsigned for weeks till Gillen’s push simply two days earlier than the speaker signed off Friday.
“Every single day that handed and not using a reauthorization of this funding threatened to finish lifesaving remedy for Lengthy Islanders and others throughout the nation. This laws now strikes one step nearer to saving the medical breakthroughs and improvements they depend on,” the congresswoman added.
The whole value of Jedlicka’s son’s remedy on the middle is greater than $1.2 million. The lab would roughly want about 1,000,000 extra {dollars} on high of that simply to remain afloat, and with out the federal funding, Jedlicka mentioned he can be accountable for each penny.
The invoice now awaits both Trump’s signature or veto, with Jedlicka hoping for the perfect within the face of uncertainty because the president’s 2027 finances proposal features a plethora of cuts to federal well being and analysis funding.
Home Speaker Johnson nor The White Home responded to The Submit’s requests for remark.
