A father from Long Island is urging U.S. legislators to reinstate crucial federal funding that has been on hold, which supports the sole laboratory he believes can treat his young son’s exceedingly rare genetic condition.
Andrew Jedlicka, an NYU business professor and father of three residing in Merrick, has been taking his youngest to a facility in Long Island City, Queens, over the past five months. This center offers a novel experimental therapy that Jedlicka hopes might completely heal his child.
Jedlicka’s son, whose name is being kept private, received a diagnosis last year for KBG syndrome, a rare genetic disorder characterized by developmental delays, speech challenges, and seizures.
Globally, there are only around 800 documented cases of this condition.
Following the diagnosis, Jedlicka expressed relief at discovering that the world’s only lab capable of potentially curing his son was conveniently located nearby.
“Initially, I believed the most challenging aspect of this journey would be finding a cure and treatment for my son,” Jedlicka shared with The Post.
But without renewed federal funding from the Small Business Innovation Research program, which lapsed in October 2025 after Congress failed to reauthorize it, the lab will have to shut its doors March 1, he said.
The total cost of Jedlicka’s son’s treatment at the center is more than $1.2 million. And the lab would roughly need about a million more dollars on top of that just to stay afloat.
Without the program being renewed from the government, Jedlicka’s family would be responsible for the entire price of treatment while the lab would need to turn to private funding to keep its doors open.
“If the lab closes, everything stops, and we don’t get the cure,” said Jedlicka, who has already spent hundreds of thousands of dollars of his own money on the treatment.
“It says a lot about healthcare in the United States,” Jedlicka told The Post.
The hold-up lies mainly with GOP Sen. Joni Ernst of Iowa, who helms the Senate Small Business and Entrepreneurship Committee and is pushing for sweeping reforms before she is willing to sign off on the funding.
These reforms include lifetime caps for recipients of grants from the fund and stricter safeguards to prevent companies with Chinese ties from accessing the money.
“Too many large companies — not truly small businesses — drain millions of taxpayer dollars by churning out white papers [research submitted by marketers] instead of turning the taxpayer’s investments into reality,” Ernst previously told the Senate.
Jedlicka said he understands the senator’s push for reform but believes families like his are being looked over.
He said he will be personally traveling to Washington in the coming weeks to lobby for the funding, with help from New York Sen. Chuck Schumer and Florida Congressman Gus Bilirakis.
“I don’t disagree with her concerns,” he said of Ernst. “But here we are almost five months later, and the grant hasn’t been reauthorized.”
New York Rep. Laura Gillen, who represents the Merrick neighborhood where Jedlicka’s family resides, fired off a letter to Ernst urging her and Senate leadership to strike a deal before families such as Jedlicka’s are left without options.
“Without a reauthorization or passing the clean one-year extension, this lab will be forced to close and my constituent will no longer be able to receive the specialized care they need,” Gillen wrote.
Ernst’s camp did not immediately respond to a Post request for comment.
