Lifesaving drug developed on Long Island saved a young girl. She calls proposed federal cuts 'selfish.'

Long Island researchers and the family of a St. James girl who received lifesaving medication developed at Cold Spring Harbor Laboratory joined federal and local officials Monday, putting a face on those who could be hurt by $50 million in potential funding cuts.

Featured at a news conference Monday was Emma Larson, 12, who was diagnosed with spinal muscular atrophy when she was about 18 months old. Doctors told her family there was no cure and the life expectancy was about two years after diagnosis. Her family enrolled her in a clinical trial at Columbia University on her second birthday for an experimental drug developed at Cold Spring Harbor Lab.

Due to the drug Spinraza, Emma, who was there Monday with her parents, Dianne and Matt, she was able to crawl again and occasionally use a walker. The Great Hollow sixth grader now has a 4.4 GPA, takes coding classes and is learning Mandarin at Stony Brook on weekends, her mother said.

While the cuts will not affect her access to the drug, officials said the proposed $16.1 million in cuts to Cold Spring Harbor Lab under National Institutes of Health funding would stop research into similar lifesaving drugs for other children.

The drug is "the only thing we have left and without it, I wouldn’t be here," Emma said at Cold Spring Harbor Lab Monday, where she attended the news conference along with Senate Minority Leader Chuck Schumer (D-N.Y.) and others. "They should put back the funding. We need it and otherwise kids’ lives can’t be saved," she said, adding that the cuts are "selfish."

The Trump Administration and Elon Musk’s initiative, the Department of Government Efficiency, or DOGE, has proposed $4 billion in NIH cuts nationwide including federal research grants and funding to operate facilities.

"They’re not experiencing it so they don’t know how dire the situation is," Emma said.

Schumer urged members of Congress from both parties to reject the cuts in an upcoming budget reconciliation bill this week in the Senate and a March 14 budget vote.

A federal judge in Massachusetts has temporarily stopped the cuts from taking effect, and a hearing is set for this week to determine their legality by executive, following a lawsuit by 22 states including New York Attorney General Letitia James.

Hundreds of Long Islanders also gathered Monday at Rep. Nick LaLota’s office in Hauppauge to protest the cuts and ask LaLota, a Republican, to meet with constituents, organizers said. The demonstration follows several others around the county to protest Trump’s executive orders and sudden funding cuts carried out by Musk.

LaLota, who serves on the appropriations committee said in a statement that a $36 trillion national debt made it "imperative that Washington returns to pre-pandemic spending levels," while protecting Social Security, Medicare, and Medicaid.

"While budget cuts are necessary, we must tread carefully to avoid jeopardizing essential services, as was the case with recent NIH funding reductions," LaLota said.  "I am especially committed to reversing these cuts. Moreover, I urge my Democratic colleagues to clarify which spending cuts, if any, they are willing to support."

Rep. Andrew Garbarino (R-Bayport) said he signed a bipartisan letter to acting NIH Director Matthew J. Memoli last week, raising concerns about cuts to NIH grants "and the potential funding shortfalls this could raise for research institutions."

The letter was also signed by other members of Congress, including Schumer and Long Island Reps. Laura Gillen (D-Rockville Centre) and Tom Suozzi (D-Glen Cove).

"Investments in medical research and innovation are critical to the development of treatments and cures for illnesses that impact Long Islanders," Garbarino said.

Gillen said she was in favor of eliminating government waste, but "canceling clinical trials for cancer patients is not the way to do this."

A White House spokesperson said NIH funding has not changed, but was reallocated to reduce overhead expenses opposed to funding research.

"Contrary to the hysteria, redirecting billions of allocated NIH spending away from opaque administrative expenses means there will be more money and resources available for legitimate scientific research, not less," The White House said in a statement Monday.

"The Trump administration is committed to slashing waste, fraud, and abuse while increasing transparency of where limited taxpayer dollars from NIH are going and how exactly they’re advancing scientific research and development," the White House said.

In addition to Cold Spring Harbor, Stony Brook University faces $17 million in cuts to support and administrative staff for research projects including 9/11-related illness, cancer, Alzheimer’s, Parkinson’s disease, dementia and ALS, Schumer said.

The Feinstein Institutes for Medical Research in Manhasset would also face $17.5 million in cuts for research projects and clinical trials. Brookhaven National Laboratory receives a $5.6 million NIH grant for drug trials and vaccines, Schumer said. Hofstra and Adelphi universities would also see a combined $200,000 in cuts.

"The cuts to NIH have been proposed by the administration, and they seem to take direct aim at Long Island, because we are one of the great centers of medical research in the country," Schumer said. "This is just absurd, it's devastating, it's angering and it's cruel This is not a purge with a purpose. It's a binge of power.

Matt Cohen, director of the Long Island Association, a nonprofit business organization, said research on Long Island also represents thousands of jobs and millions in economic development following recent years of financial strife following the COVID-19 pandemic and rising prices.

"Taking a meat cleaver to the NIH budget is not a smart investment," Cohen said. "Right when you get to see some light at the end of the tunnel, here's another gut punch that would really damage the economy here on Long Island and set us back when we really should be coming together and pushing forward."

By John Asbury

john.asbury@newsday.comJohnAsbury

John Asbury is a breaking news and general assignment reporter. He has been with Newsday since 2014 and previously worked at The Press-Enterprise in Riverside, California.