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For more than 15 years, a patch of woods in northeast Pennsylvania has hosted a week-long summer camp for children who have survived brain injuries. Camp Cranium is a testament to the fact that medical advances have meant more people survive such injuries. But as Lydia McFarlane at member station WVIA reports, recent decisions by Congress and the Trump administration have jeopardized brain injury research.
LYDIA MCFARLANE, BYLINE: It was Lucas Hardy's turn at the outdoor rock wall.
UNIDENTIFIED PERSON #1: You ready?
MCFARLANE: A mechanical hoist lifted him from his wheelchair, and he started climbing with his arms.
UNIDENTIFIED PERSON #1: You got the thing - you got the thing on?
UNIDENTIFIED PERSON #2: (Inaudible).
MCFARLANE: The machine supported the rest of his body and gave the 14-year-old an extra boost.
UNIDENTIFIED PERSON #3: Go dude.
MCFARLANE: When Hardy reached the top 30 feet up, he smiled and rang a bell.
(CHEERING)
MCFARLANE: There were 25 campers this summer at Camp Cranium. They ranged in age from 10 to 21. Brianna Engleman suffered a brain injury when she was 5 during treatment for severe epilepsy. She first came to camp as a teen. She says that was the first time she was around so many people like her.
BRIANNA ENGLEMAN: It made me think, wow, there's actually good people out there.
MCFARLANE: Engleman flits between the archery and crafting groups, gathering song requests for a dance that evening. She's 21 now, and it's her last year as a camper. Next time she comes back, she says it'll be as a counselor.
ENGLEMAN: It's shown me, like, all the different, like, conditions out there. And I can write about them, shown me different ways to adapt. I've gotten more confident, feeling more confident in myself since I've been here.
MCFARLANE: Two point eight million Americans suffer a traumatic brain injury every year. Almost half a million of them are children, though recent research suggests that's probably an undercount. Last year, the Centers for Disease Control and Prevention was just about to launch a new nationwide system to track concussions, one form of traumatic brain injury. But then the Trump administration fired hundreds of CDC employees, including the team in charge of the tracking program.
Emily Hilliard is a spokeswoman for the United States Department of Human Services. In a statement, she said the CDC's brain injury work is now being handled by other staff. But the firings haven't been the only cause for concern among advocates. They're also worried about future federal support. Rebeccah Wolfkiel is the executive director of the National Association of State Head Injury Administrators.
REBECCAH WOLFKIEL: Brain injury can happen to anybody, and it happens to most people, frankly. At some point in their lives, they might sustain a concussion.
MCFARLANE: For almost 30 years, Congress has funded research through the Traumatic Brain Injury Act, the TBI Act. It's been renewed four times, most recently in 2018. But Congress didn't renew the act in 2024. Right now, money is still flowing to the CDC. But without reauthorization, the future is unclear. Rick Willis is the CEO of the Brain Injury Association of America.
RICK WILLIS: The TBI Act is the only piece of federal funding for traumatic brain injury at the federal level. So really, we're aiming just to preserve what we have.
MCFARLANE: Along with money for research, the act provides millions in grant funding to states to support brain injury programs. Camp Cranium, though, is mostly insulated from the federal uncertainty. It's a nonprofit that's mostly supported by private donors. Operations Director Drew Meyer was supervising archery for the campers. While he watched, a few tears slipped out from behind his dark sunglasses.
DREW MEYER: They'll come out here, and they'll shoot for three hours and start hitting the target. I haven't seen anything yet that they haven't been able to do.
MCFARLANE: Tony Sadowski is the camp's executive director. His teenage son, Bryan, is also a longtime camper. He suffered a brain injury when he was 6.
TONY SADOWSKI: We go from that scary, traumatic moment as parents, where you're in the emergency room not knowing what version of your son's going to wake up, and we're very lucky to be able to be here and enjoy this week with him.
MCFARLANE: The House of Representatives voted in July to renew the federal law supporting traumatic brain injury research, but the Senate has yet to act.
For NPR News, I'm Lydia McFarlane in Pittston, Pennsylvania.
(SOUNDBITE OF NEXERI SONG, "FADE INTO YOU")
FLORIDO: This story comes from NPR's partnership with WVIA and KFF Health News. Transcript provided by NPR, Copyright NPR.
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