Raise Our Voices shares the personal stories of families and communities whose lives have been harmed by decisions made far from home. These voices help us understand what’s at stake, and how these decisions will affect us. And sharing stories can make a difference.

Lives are being disrupted. Futures are at risk. And in some cases, the stakes are life and death. But through storytelling and community, we can cut through the noise. We can listen, understand, and respond. Stay tuned as we Raise Our Voices in the coming weeks and months. Meanwhile … join us.

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Ben had a glioma, an aggressive brain cancer. His neurosurgeon didn’t offer much hope.

“The doctor was like, ‘I can't operate on you. Your tumor is in your brain stem. There's no real option.’”

Ben researched his tumor, and eventually found hope through a doctor in Michigan who knew of a drug trial that might help. Because Ben’s cancer is so rare, pharmaceutical companies don’t have financial incentive to support research, so instead the trial was funded primarily by the federal government, through the National Institutes of Health and the National Cancer Institute. The drug was ONC201.

“The philosophy at the time was, let's do this to just stop the tumor so you don't just like die immediately, and then hope for a miracle after that. And that's what presented itself in ONC 201.” — Ben Lobovitz

Ben had no idea that the majority of cancer research in the US is funded by the federal government. Like many of us, he didn’t realize that when funding, staffing, and research at the National Institutes of Health (NIH) is slashed, that means the National Cancer Institute—and cancer research itself—is cut.

Six-plus years later, Ben is likely the longest-surviving victim of his particular type of glioma. The trial drug worked. Said Ben,

“My father passed away from a neurodegenerative disease when I was 27. He would say, “Miracles happen every day.” Unfortunately, he wasn't so lucky. But I like to think that I am. The drug gave me a hopeful trajectory, because after radiation and chemo, there were no other options for me.”

Ben spent this spring and summer worried that that his miracle drug would not be approved by the government. The Food and Drug Administration (FDA), which is responsible for drug approvals, lost 3,500 employees in April, the direct result of government cuts. As he said in his Raise Our Voices interview,

" My life is, for better or worse, in their hands.”

Ben has two beautiful daughters, both born during his clinical trial. He’s determined to see them grow up. Said Ben,

“I have an immense amount of gratitude, especially for these federal workers who have enabled me to start a family, and I couldn't be more grateful.”

Thankfully, Ben’s drug was approved this summer, but he suffered through months of uncertainty, not knowing whether his “miracle drug” would be available. Many other trials were abruptly ended. Funding for cancer research has been dramatically cut. Meanwhile, the FDA is critically understaffed, which is likely to impact approval of cutting edge, lifesaving drugs going forward.

So many of us have seen friends or family struggle with or succumb to cancer. Ben chose to raise his voice to help us understand what’s at stake for everyone touched by these devastating diseases.

Cuts aren’t just happening to some scientist in an ivory tower. Cuts are happening to us. The cancer care you may someday need may no longer be available. Stories like Ben’s are the key to understanding what’s at stake.

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Details on Ben’s Stein Lobovits’ cancer trial, and info on government cuts to cancer research.

• NIH research paper on the ONC201 trial

• “Study finds improved survival for incurable brain tumor, providing ‘a crack in the armor’”

• “Federal Funding Cuts Spark Concern Over Future of Cancer Research and Care in United States”

• “Future Cancer Cures in Jeopardy as President Proposes Massive Cuts to National Cancer Institute”

• The Trump administration’s NIH and FDA cuts will negatively impact patients

“ My husband called me during his workday. That's odd, so I answered the phone and he said, “You have to get to the hospital right now. Claire's there, I dunno what's going on.” 

Shayna drove through rush hour traffic to the hospital. It was a 45-minute drive, but seemed like it took hours. When she finally walked into the emergency room and saw the nurse, she immediately knew: Claire was gone.

“They let my husband and I go back to see Claire, and she's just wrapped up and swaddled, and we held her for a while. And the doctor came in, and he didn't know what had happened to her.”

Shayna later learned Claire’s in-home daycare provider had Claire nap on an adult mattress. Claire likely suffocated. That’s because at Claire’s age, infants can flip from back to belly, but they don’t have the muscle coordination to flip themselves back over. Once they’re on their bellies, their breathing can be obstructed by a blanket, toy, or soft mattress—but because they can’t right themselves, they can’t breathe. Eventually, they may die.

These infant deaths are 100% preventable. Helping new parents and infant caregivers understand and practice “safe sleep” is key.

After Claire’s death, Shayna started the Claire Bear Foundation, dedicated to educating parents and caregivers around safe sleep practices. Like countless churches, daycares, parenting orgs, and others, the Clare Bear Foundation relied heavily on materials crafted by the federal government’s Safe to Sleep campaign. The Safe to Sleep team produced educational fliers, videos—all vital supports to educate parents and caregivers.

“Our foundation has always used their materials, looked to them for guidance, reached out when we've had questions. They have been instrumental in saving the lives of thousands of infants,” said Shayna.

In May 2025, Shayna learned the Safe to Sleep staff had been terminated. With their termination, the program ended. This government cut to an agency most of us have never heard of very likely will cost children their lives.

Said Shayna, “Traditionally, infant safety and keeping babies alive has been something we could all agree on. So I don't see how someone can say, ‘Well, no, we don't need that.’”

It can be hard to fathom that tucking a baby in bed with a stuffed toy, a soft blanket, or a super cushy mattress can be dangerous—even deadly. The campaign’s materials effectively explained this to thousands of parents and caregivers. But while the Safe To Sleep program’s website is still online, it hasn’t been updated—won’t be updated—and virtually all the educational materials are out of stock.

Said Shayna, “Those federal workers were responsible for saving thousands of babies from dying in their sleep. That was their job. My greatest fear is we are just going to slide back and see a huge spike in infant deaths.”

“Other families are going to have to go through what my husband and I have to go through every day, and that just makes me furious.  Every decision I've made since is so Claire doesn't have this wasted life.”

Are government cuts hurting you, your family, or your community?

Join us—Raise Your Voice—and help others understand how what’s happening in Washington impacts our daily lives. Message with your story, share what we’re doing — and consider a paid subscription or direct tax-deductible donation. Your support helps this non-profit, non-partisan project continue and grow.

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A deep dive into Claire’s story:

• The Claire Bear Foundation

• Safe to Sleep Campaign (now terminated)

• ARTICLE: NIH Cancels Participation in Safe to Sleep Campaign that Decreased Infant Deaths

• ARTICLE: Federal purge guts infant death prevention campaign, alarming doctors

For this week’s Raise Our Voices, we spoke to a USFS worker in the mountain west. Her interview is honest and thoughtful: she cares about what she does, and works hard at it, so we’re letting her take it from here. What follows is her full audio interview, and a lightly-edited transcript. Most of the photos are hers.

I raised three boys. After that, I decided I wanted to do something for myself. Being raised in the mountains, of course, I loved the mountains, and loved the fact that I wanted to be close to nature and do something that would allow me to be outside. So I decided that the secret to life is to do something that makes you happy, and working in nature made me happy.

After my boys left home, I went back to school. It took me about six years working part-time and going to school to get two degrees, one in forestry, one in natural resources, and then I decided that I wanted to become an employee of the Forest Service and work there as long as I could.I was finally hired as a permanent seasonal employee last year after working four seasons as a temporary. And I was really excited. I was like, “I'm permanent now. I don't have to go through the whole hiring process every year. I'm protected. I can have insurance.”

And then in what's now come to be known as the Valentine's Day Massacre, I was fired. I cried. My heart was broken.

In March, a court order was issued by a federal judge that said that our firing was indeed illegal. However, a couple weeks ago, they sent out another early retirement offer. Of course, along with that is the threat that if you don't take it, they may do a reduction in force. And we would lose our jobs.

I'm an older woman. If I lost my job, it's not gonna be the end of the world. However, some of these people have children and they have mortgages, they have kids going to college. It's just not right. I wanna keep working there as long as I can. I love talking to the public and to have nature as my office. I mean, you can't be any happier than that on the job. My coworker and I, during an average day out, we will put over a hundred miles on our truck, and that's not driving on the highway or on paved roads. That's off on dirt roads in the forest a lot of the time. So it's pretty beautiful office being out in nature.

I maintain recreation sites such as campgrounds, day use areas. My coworker and I cover from the foothills of the Sierra Nevadas all the way to the top of the pass. Some of the jobs aren't so glamorous, cleaning vault toilets and collecting trash, but those are jobs that are necessary to keep these areas sanitary and open.

One of the things that we would do is pick up used toilet paper out in the forest because people use it and throw it on the ground and leave. Then there's the fun parts, like identifying hazard trees and removing them so that they don't fall on the public while they're camping. I can run a chainsaw. I cleared 67 trees from the highway to a campground in two days by myself with the chainsaw.

There was something thrilling about that, you know? I was so proud of myself that day. I got that road open by myself in time for Memorial Weekend. It was really important to me to do the work that needed to be done so that the public could come enjoy the forest.

The whole reason that we have the Forest Services to manage it for multiple uses. Not only for timber and you know, profitable things, but also for the public who deserve to be able to get out there and recreate. The toilets, if left for a day or two, especially after a holiday weekend when you have a lot of people drinking, it's gonna become, pardon my French, a real shitty situation really fast. And I mean that literally. I'm not saying figuratively.

If it becomes unsanitary, we can't keep those campgrounds open. And if you're 15 miles out on a dirt road, and you have an accident and nobody knows you're out there, I may not be there to find you. You may die.

I'm able to patrol for illegal campfires because the conditions are too dry and campfires are dangerous. We found hundreds of hot campfire pits and put them out. I was finding hot coals laying on the ground. That were starting to spread and smolder. I mean, that could have been a huge fire, and this was probably a mile as the crow flies away from homes and businesses, a little community. That's something that we caught and stopped that could have gotten outta hand and could have destroyed life and property.

So if we're not out there working for the public, who's going to be out there doing the things that need to be done to keep the forest safe and healthy for visitors?

I'm much more than just someone who goes out and cleans bathrooms. I organized several volunteer days. I had over 40 people show up to clean up about a five mile stretch of river. We hauled off thousands and thousands of pounds of trash: refrigerators, mattresses, sofa beds thrown off of cliffs. We're like scrambling down cliffs to grab these things, pull 'em up. It's gonna be really hard to replace us.

It's not about keeping the forest for people. They really wanna open it up to unregulated, logging, mining, it's all about filling up billionaire pocket books. Our county is based pretty much on tourism. If we lose that money, our county probably won't survive.

Federal employees right now are living in a state of terror. They're afraid to speak out. The more I watched my friends getting fired, my coworkers, people that I know don't deserve to be fired because this government wants to play whatever games it's playing with people.

I got mad, I got angry and I was like, you know, I'm not gonna just sit quietly and take this. And that's when I decided that I was gonna stand up and speak out.

Why should you care? Because as of this moment, these lands belong to you. These lands belong to me. They belong to my grandchildren, and their children, and the generations upon generations to come after that. They do not belong to Elon Musk. They do not belong to the current administration.

I'm sorry. I have a really hard time getting through this without choking up, so you’re just gonna have to bear with my emotions, 'cause I am emotional.

One thing that really angered me right after I got fired was someone saying that federal employees don't deserve their jobs. Those are not real jobs producing federal revenue. Federal employees do not deserve their jobs, federal employees not do not deserve their paychecks. Well, I'll tell you what, I work really freaking hard out there for the public, and I make less than someone working at McDonald's right now. There's not a lot of people lined up to clean vault toilets for 15 bucks an hour.

I don't do this because I wanna get rich. I do it because the forest is worth it. The public deserves to be able to recreate and enjoy the forest. We need to manage the forest in a way that our children and our grandchildren will be able to go out and enjoy this precious commodity. This land is amazing and future generations deserve to be able to have it.

These lands belong to the people of the United States, and the people of the United States are the ones that are gonna have to step up.

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