A 4-foot, 2-inch giant fights against NIH cuts that affect her

Yahoo

08-05-2025

NEW YORK (PIX11) – In the past three months, the Trump administration has cut the National Institutes of Health's 60,000 research grants by about 800, and counting.
While that represents just over one percent of all NIH research grants, the financial value of those grants far outweighs their number.
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So far, more than $2.3 billion in research has been discontinued, or nearly 5% of the NIH's yearly research budget of $47 billion. The Trump administration this month also proposed slashing the NIH budget for next year by nearly half.
This year, meanwhile, it's worth noting that nearly one-third of discontinued grants were for research being carried out in New York.
One New Yorker who's taking an active stance to prevent further cuts points out that the value of the research goes far beyond each project's price tag. Lauren Ruotolo, 48, has been a direct recipient of NIH research, as well as a participant.
'I never thought that I was that different,' Ruotolo said in a recent interview at her apartment, with her Maltipoo, Dutchie, sitting beside her on the sofa.
In many ways, Ruotolo isn't particularly different from any other author, content creator, public speaker or influencer. She did, however, talk about one way in which she stands out.
'I have McCune-Albright syndrome,' she said. 'It's a very rare disease.'
The disease strongly affects bones as they grow, beginning at birth. It creates cysts on bones, which fill with blood.
'At the age of eight, I actually stopped growing,' said Ruotolo about the effect of her condition.
That has not kept her from going anywhere or doing anything. Still, she said that she's fully aware of the challenges that she, and other people with disabilities, face.
It's transformed her from being only a bone disease patient to also becoming an advocate for people with disabilities. She said that one issue in particular is front and center in her advocacy.
'America's crown jewel is biomedical research,' she said, as she pointed out that most of that research is funded by the NIH, which is the largest funder of biomedical research in the world.
'The amount of cuts that have been made is a significant issue,' said Ruotolo. 'At the end of the day, it affects patient care.'
She speaks from personal experience.
'I go and I get poked and prodded in every single test that you can imagine,' she said, describing a process in which she's been involved for more than 15 years.
Ruotolo has been one of a variety of patients in studies and treatment of her rare bone disease at NIH headquarters, in Maryland.
She said that while it's extremely thorough and time-consuming, it's time well spent – all of the time.
'I got to meet children with [McCune-Albright Syndrome],' she said, 'and they got to see me, and I got to tell them that it's going to be okay,' among the many benefits she said that participating in NIH research on her condition has given her and others.
However, during a recent visit to Capitol Hill to advocate for fellow differently-abled Americans, she said, one major development occurred which showed her how under attack many programs are.
'[At] the agency at the NIH that my study is in,' Ruotolo said, '17% of the staff was cut that day.'
It was part of an effort to cut up to 20,000 jobs ordered by Kennedy, whose department, HHS, oversees the NIH.
In explaining the cuts recently, Kennedy said that the point of them is simple.
'We're eliminating redundancies,' he said. 'We're streamlining the agency.'
Most of the grants HHS has cut are related to HIV / AIDS; transgender health; diversity, equity, and inclusion in healthcare; and COVID. Also, while more than two-thirds of the cuts are in states that voted blue in the 2024 election, red states are by no means immune, with the remaining one-third of the reductions.
'It seems like this is just the start,' said Noam Ross, executive director of rOpenSci, a data-science non-profit that has collected and analyzed details from scientists directly affected by the grants' cuts.
'This is going to have huge impacts in the long term,' Ross said about the reductions in research funding. 'These grants are planned out for years, and then can take five years, six years, seven years, to complete this research because it's difficult, complex scientific work.'
'And they can only do that [work],' he continued, 'if the government is going to make a commitment, and keep its promises.'
When the Trump administration does not keep the promises that the federal government made to back research, Ross said, the result is something that affects patients like Ruotolo, as well as the rest of Americans who'll need high-quality healthcare at various points in their lives.
Ruotolo, who describes herself as being no different than anyone else, is able to be no different – despite her rare disease – because of treatments and innovations made through the NIH.
That point is not at all lost on Ruotolo. She said that it's motivated her to increase the number and frequency of her trips to Washington, D.C. to lobby legislators and policymakers, and to try to prevent more cuts.
She said that she's also been speaking out on social media, and on other platforms, as well as writing letters and other content, about preserving and restoring NIH research. She's also encouraging as many people as possible to do the same.
'Because I don't want to just sit at home and be upset and be angry and scream at the TV or just scroll on Instagram,' Ruotolo said. 'I can't just sit down, and not do anything.'
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