Alzheimer’s Disease Research Centers Struggle As 1/3 Lose Their Federal Funding

When people experience concerning memory problems — losing their keys more often, forgetting important events, or struggling to find the right word in the moment — they turn to the internet. 

One of the most comprehensive resources that pops up is their local Alzheimer’s disease research center, often affiliated with a local university or hospital. 

There are 35 such centers in the United States, providing important information and resources to patients and caregivers, conducting research that furthers our understanding of dementia, and accelerating the development of new diagnostic tools and treatments. If you get a diagnosis from a primary care physician or neurologist, or want to get a second opinion on your cognitive health, you can book an appointment at an ADRC. 

Most of these 35 centers rely on U.S. federal funding to keep the lights on. And for more than a third of them, that funding has unexpectedly vanished.

In an investigation, Being Patient found that four U.S. ADRCs have been without federal funding since the end of February. And as of May 1st, the NIH grants for another 13 of the nation’s 35 Alzheimer’s disease research centers have run out, reducing the country’s Alzheimer’s disease research center and brain bank capacity by a dramatic and incapacitating 40 percent, and leaving decades of invaluable, globally referenced data — not to mention sensitive biological samples, including brains donated by deceased Americans — hanging in the balance.

Elizabeth Head leads the Irvine center’s effort to train new scientists at the University of California Irvine ADRC. This center has been without funding since the end of February. According to Head, the basic infrastructure of Irvine’s center — and most other ADRCs — relies on NIH funding. “If that funding is not available, there is no ADRC,” she told Being Patient.

According to Head, each ADRC also has its own unique research specialty. For example, the UCI center focuses on studying Americans over 90 as well as those with Down syndrome, which is associated with a 9/10 chance of early-onset Alzheimer’s. 

“Also, remember, we are all connected, so one loss can have an impact on all centers,” she said. Her center in Irvine is one of several that has gone into survival mode, slashing expenses, with its future hanging in the balance. “We’re doing everything we can to keep our staff on board,” she told Being Patient.

Alzheimer’s research centers and the NIH

Typically, these federal grants to ADRCs from the U.S. National Institutes of Health — about $3 million per center per year for five to 10 years — are renewed by researchers, ensuring the centers have resources to pay staff, conduct research, educate caregivers, and store brain samples. 

Though some centers have received funding continuously for decades, the money isn’t guaranteed. Research centers file grant applications that are reviewed and evaluated by panels of independent scientists. But this year, things have gone quiet at the federal level. These grants are expired, and they have yet to be renewed, throwing centers into a period of uncertainty, with some teams “scrambling” to take care of even the “basic functions” of their operations.

The University of Pittsburgh Alzheimer’s disease research center is among them. “We were supposed to get renewed after our previous funding ended at the end of February,” Julia Kofler, the center’s co-director, told Being Patient. (Kofler is not speaking on behalf of the University of Pittsburgh.) “It’s now two months that we had to scrape funds together to just maintain the basic functions of the ADRC.”

The amount of grants that the NIH issues to scientists has plummeted by $2.3 billion in the first few months of 2025 due to a trend of steep, high-level, federal funding cuts and stoppages on government spending. Cuts so far have caused lags and missed deadlines in the NIH’s standard grant application review process that determines which research is eligible for funding.

“As of now, our ADRC and its brain bank have not stopped activities,”  David Holtzman, director of the Knight ADRC at Washington University in St. Louis told Being Patient. “If we are not re-funded, along with many other ADRCs around the country in the same situation, this would result in significant uncertainty about whether and how our brain bank and many other aspects of Alzheimer’s disease related research would continue.”

Kofler said that the center also needs to edit the 1,000-page grant document to remove mentions of words like “women” or “diversity” to comply with previous executive orders banning diversity, equity, inclusion, and accessibility. “I don’t think it’s the best use of our time,” said Kofler. “But we’re doing our best to make sure that the center gets renewed for funding.”

The directors of other ADRCs are funded through 2025 but will be up for funding renewal in the coming years. Being Patient got in touch with the directors of the 35 ADRCs, 15 responded, and eight expressed concern over funding, a few declined to comment, and others said they hadn’t yet been affected.

“At present there are no interruptions in our research programs, but we are very concerned and monitoring developments at the NIH on a daily basis,” Andrew Saykin, neurologist and director of the Indiana University ADRC, told Being Patient. The Indiana University center is submitting a grant to renew its funding in the fall.

Gary Rosenberg, director of the University of New Mexico ADRC, told Being Patient they haven’t experienced any problems with their funding so far, but “the situation is fluid.” 

The University of Kentucky ADRC is also presently unaffected, its director, Peter Nelson told Being Patient. 

“As of now our funding has not been directly affected although one of the grants that funds our activities was temporarily discontinued (and subsequently restarted),” Nelson wrote in an email. “The funding environment seems very unpredictable. That has probably decreased productivity in the field, and has had a negative impact on the training of the next generation of researchers.”

Brain bank funding on ice

Funding gaps at ADRCs put one irreplaceable resource at risk: Brains. Thousands and thousands of actual brains are stored at these centers to help understand Alzheimer’s and other dementias. 

The University of Washington’s center alone houses more than 4,000 brains, while the UCI ADRC brain bank has more than 1,000. These stores allow researchers to do things like compare the brains of people who received anti-amyloid drugs to those who died with Alzheimer’s decades ago.

In addition to gleaning insights from studying the brains themselves, scientists at ADRCs store and utilize extensive data on study participants’ health over time, including cognitive tests, brain scans, and blood tests, helping them to better understand Alzheimer’s disease and how it progresses.

People with dementia or familial risk factors may choose to donate their brains to science to help further this research. After an autopsy, a donor’s brain is dissected, and a portion is stored in a -80ºF freezer for preservation. Other portions are sliced and examined by neuropathologists in search of signs of Alzheimer’s pathology. Brain banks are an invaluable resource in today’s question for neurodegeneration treatments and cures: Even brains donated 40 years ago are still in use by researchers today.

After enrolling with the ADRC, participants can opt in to learn about clinical trials that they may qualify for, speeding up recruitment.

According to Head, the most expensive aspect of running a brain bank is paying the staff, who have to be on-call 24/7 to coordinate donations. “I’ve been able to put most of the staff on other grants I have and keep them supported so that we don’t lose any traction,” she said. “We don’t have to turn away anybody who’s willing to do brain donation.”

Dirk Keene, a professor and the director of neuropathology at the University of Washington ADRC told NBC News that if funding isn’t renewed, the center will focus on preserving brain samples to honor the commitment made to the donors. “That’s our priority, is to get these brains in the lab and preserved, and they can sit for 10 years if that’s when the funding comes back,” said Keene.

“I don’t know the fate of what would happen if we lose funding in regard to the samples at this point,” Holtzman said.

ADRCs house invaluable Alzheimer’s data

According to Kofler, alongside biological samples, the U.S.’s ADRCs are the keepers of some 40 years of longitudinal data on the brain health of tens of thousands of Americans. Collectively, these centers are currently tracking over 17,000 research participants to understand why some people remain cognitively healthy as they age and others develop dementia. This type of research is helping scientists zero in on effective treatments and prevention strategies.

All this invaluable dementia data is shared with researchers across the world through the National Alzheimer’s Coordinating Center, under the umbrella of the National Institute on Aging. (This, in turn, is under the umbrella of the National Institutes of Health, which has been in upheaval since the new administration’s leadership change.) 

But the future of this globally referenced data repository, too, is uncertain. Today, a notice on the site reads: “This repository is under review for potential modification in compliance with Administration directives.” 

The notices were added to all federally funded human data repositories earlier this year in line with an executive order to review gender identity descriptors, according to an email reviewed by The Transmitter.

The National Alzheimer’s Coordinating Center team has received no information from the federal government about what the banner could mean. “We are still waiting to hear what’s coming next, but have no idea what that might be nor when,” NACC director Walter Kukull wrote to Being Patient.

According to one of the leads at an ADRC who asked to remain anonymous due to the sensitivity of the topic, these directives aim to stop researchers from collecting data about race and sexual orientation. 

“Nothing would be more heartbreaking, frankly, than to go another five years of purposely not capturing data, only to find out later it was critically important for our understanding of Alzheimer’s disease,” the source told Being Patient. “The biomarkers are different, the progression could be different, and their response to treatments could be different.”

A shift to private and state funding?

As ADRC funding becomes more uncertain, private philanthropists and states will need to step up. 

Sudha Seshadri, director of the South Texas ADRC, said that their brain bank would not be affected by a lack of fundig because of strong philanthropic and state support.

“Greater funding for brain donation programs would be invaluable to speed up finding answers for all the various causes of dementia and new research methods such as digital pathology and spatial omics enhance the value to researchers worldwide of every precious brain donation,” Seshadri told Being Patient. “We are immensely grateful to our fellow Texans whose families make this generous gift.”

The Pittsburgh ADRC is also amplifying its fundraising efforts to make up the shortfall. 

“We have reached out to donors and many of them have very graciously stepped up and provided some emergency bridge funding,” said Kofler. The center has dipped into discretionary funding and moved around funding to prioritize paying its staff, so they haven’t had to do any layoffs yet. 

Head suggests people reach out to government officials to tell them that the research and work being conducted by ADRCs are important, and that the grants need to be reviewed and renewed. 

“All of us who are at ADRCs are doing everything we can to keep the operation going because we believe in it,” said Head. “If we lose a couple of years, the momentum [of Alzheimer’s research] dramatically changes.” 

Of the 22 ADRCs still receiving federal funding, six are funded through 2029, 14 will be hoping for the renewal of their federal grants in 2026, while one more runs out of funding at the end of July.

ADRC funding, nationwide

ADRC Funding Table