A Merrick father who feared his young son could lose access to a potentially lifesaving treatment is now expressing relief after President Donald Trump signed legislation restoring critical medical research funding into law.
Andrew Jedlicka, an adjunct professor and consultant who has lived in Merrick since 2014, spent months advocating for the reauthorization of the Small Business Innovation Research and Small Business Technology Transfer programs, known as SBIR/STTR. The funding had lapsed in October 2025, putting at risk laboratories and small businesses conducting experimental medical research.
“I was extremely excited and filled with gratitude,” Jedlicka said. “Not just for my son and the lab that’s trying to help treat his genetic disorder, but for all research facilities and small businesses that were looking for that funding.”
Jedlicka’s 5-year-old son, whose name he declined to provide, was diagnosed last year with KBG syndrome, a rare genetic disorder associated with developmental delays, seizures and other health challenges. A Long Island City-based lab is working to develop a personalized treatment for him, though the process is still in its early phases.
The potential closure of that lab earlier this year prompted Jedlicka to travel to Washington, D.C., during Rare Disease Week, where he met with lawmakers and their staff to advocate for restoration of the funding.
He credited Rep. Laura Gillen, who represents Merrick, along with U.S. Sen. Chuck Schumer’s team and Rep. Gus Bilirakis, for helping move the legislation forward.
“I spoke directly and met with Congresswoman Gillen in Washington, and she wrote letters to help get the bill passed,” Jedlicka said. “Senator Schumer’s team was also very helpful, and there were others on both sides of the aisle who supported this.”
Gillen announced that the House of Representatives advanced the Small Business Innovation and Economic Security Act after months of delays, reauthorizing the SBIR/STTR programs through 2031.
“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,” Gillen said in a statement. “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 treatment for his son has not yet begun, he said, requiring multiple research phases, which he has partially funded out of pocket. If successful, the treatment could significantly reduce or eliminate symptoms associated with KBG syndrome.
“His seizures could go away, and other symptoms could go away,” Jedlicka said. “That’s what we’re working toward.”
Jedlicka said the experience underscores broader challenges for families navigating rare diseases, particularly when delays in federal policy put research at risk.
“It was disturbing how long it took to reauthorize such an important bill,” he said, noting that more than 100 labs and small businesses were waiting for the funding.
Looking ahead, he said he plans to continue advocating for rare disease research.
“I’m in it for life,” Jedlicka said. “I want to help not just my son, but others dealing with genetic disorders.”
