Full Breakdown
Long Island Father Advocates for Federal Funding to Save Son's Treatment
2/23/2026, 2:18:35 AM
Urgent Plea for Funding Restoration
Andrew Jedlicka, a business professor from Merrick, Long Island, is urgently appealing to U.S. lawmakers to restore federal funding for a laboratory that provides treatment for his son’s rare genetic disorder, KBG syndrome. Diagnosed last year, Jedlicka's son is one of approximately 800 known cases globally, characterized by developmental delays, speech issues, and seizures. The only lab capable of potentially curing his son is located in Long Island City, Queens, where Jedlicka has been taking him for experimental treatment over the past five months.
Jedlicka's plea comes as the Small Business Innovation Research program, which funds the lab, has not been reauthorized since it lapsed in October 2025. Without renewed funding, the lab is set to close on March 1, 2026, leaving families like Jedlicka's without critical treatment options. The total cost of his son’s treatment exceeds $1.2 million, and the lab requires an additional million dollars to remain operational.
Legislative Challenges and Perspectives
The delay in funding is primarily attributed to GOP Senator Joni Ernst of Iowa, who chairs the Senate Small Business and Entrepreneurship Committee. Ernst is advocating for significant reforms to the funding program, including lifetime caps on grant recipients and stricter regulations to prevent companies with ties to China from accessing funds. She has expressed concerns that large companies are misusing taxpayer dollars by producing non-viable research instead of delivering tangible results.
Jedlicka acknowledges Ernst's concerns but emphasizes the urgency of his family's situation. He plans to travel to Washington, D.C., to lobby for the funding, with support from New York Senator Chuck Schumer and Florida Congressman Gus Bilirakis. “I don’t disagree with her concerns,” Jedlicka stated, “But here we are almost five months later, and the grant hasn’t been reauthorized.”
Local Support and Advocacy
Local representatives are also voicing their support for Jedlicka's cause. New York Representative Laura Gillen, who represents the Merrick area, has sent a letter to Ernst urging swift action to reauthorize the funding. Gillen warned that without a resolution, families like Jedlicka’s would be left without necessary medical care.
Conflicting Reports & Gaps
While there is a consensus on the need for funding, there are differing opinions on the proposed reforms. Ernst's camp has not publicly responded to requests for comment regarding the urgency of the funding situation and the implications for families reliant on the lab's services.
Verbatim Quotes
“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,” — Laura Gillen, U.S. Representative
“I thought the hardest part of this journey would be to find a cure and a treatment for my son,” — Andrew Jedlicka, Father
“It says a lot about healthcare in the United States,” — Andrew Jedlicka, Father
“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,” — Joni Ernst, U.S. Senator
