A father from Long Island is urgently appealing to U.S. lawmakers to reinstate vital federal funding that he claims is essential for the only lab capable of treating his 5-year-old son’s rare genetic condition.
Over the past five months, Andrew Jedlicka, a New York University business professor and father of three from Merrick, has been taking his son to a treatment center in Long Island City, Queens, for an experimental therapy he believes could provide a permanent solution.
The boy, whose name is being withheld, was diagnosed with KBG syndrome last year—a rare genetic disorder linked to developmental delays, language issues, and seizures.
Worldwide, there are around 800 documented cases of KBG syndrome.
Following her son’s diagnosis, Jedlicka remarked on the fortunate discovery that the only lab that could potentially help was located nearby.
“I thought the hardest part of this journey would be finding a cure for my son,” Jedlicka explained.
However, he mentioned that the lab is on track to close on March 1 unless the Small Business Innovation Research Program is revitalized. This funding mechanism lapsed in October 2025 due to Congress’s failure to renew it.
The cost of treatment for Jedlicka’s son so far has exceeded $1.2 million, and about another $1 million is needed to keep the lab operational.
Without government support, Jedlicka’s family would have to shoulder the entire treatment cost, while the lab would rely on private donations to stay open.
“If the lab closes, everything stops and we don’t get a cure,” Jedlicka said, revealing he has already spent hundreds of thousands out of pocket.
“This speaks volumes about the state of healthcare in the United States,” he added.
The delay in funding is primarily attributed to Republican Senator Joni Ernst from Iowa, chair of the Senate Small Business and Entrepreneurship Committee, who is advocating for significant reforms prior to any funding approval.
These proposed reforms would impose lifetime limits on grant recipients and enforce stricter protections to ensure funds aren’t accessed by companies linked to China.
“We see too many large firms—and not genuine small businesses—wasting taxpayer money on unnecessary paperwork instead of delivering real value for taxpayer investments,” Ernst previously stated in Senate discussions.
While Jedlicka acknowledged the senator’s desire for reforms, he feels families like his are being overlooked.
He plans to visit Washington soon to advocate for renewed funding, with support from Senator Chuck Schumer of New York and Representative Gus Bilirakis of Florida.
“I don’t share her concerns,” he said regarding Ernst’s stance. “Yet, months have passed and the grant remains unrenewed.”
New York State Representative Laura Gillen, who represents the district where Jedlicka lives, wrote to Ernst urging an agreement with Senate leadership before families like Jedlicka’s are left without options.
“Without reauthorization or a successful extension, this institute will be forced to close, preventing my constituents from receiving the care they need,” Gillen stated.
Ernst’s office had not responded immediately to inquiries regarding the situation.
