Connor’s Story: Shaker Heights teen may hold the key to life-changing Muscular Dystrophy research, but threatened cuts put its future at risk

Mark Naymik & Susan Moses | 11.14.25

The National Institutes of Health invests more than $1 billion in Ohio medical research every year, supporting work that fuels breakthroughs in cancer, gene therapy, rare diseases, and more.

But under the proposed 2026 federal budget, that critical pipeline of science funding is at risk of being cut — a shift that doctors warn could slow or even halt lifesaving progress.

For people living with rare and devastating diseases, the impact of such cuts isn't abstract — it's personal, and for one Northeast Ohio family, it hits especially close to home.

Meet Connor Adams, a 19-year-old Ohio State University student from Shaker Heights. Connor is living with Duchenne's muscular dystrophy, a rare genetic disorder that typically steals a child's ability to walk by their early teens.

Connor knows that the research his life depends on is powered by NIH support, and he knows what could be lost if that funding dries up.

Even before he understood the science surrounding his own diagnosis, Connor understood something else: service. Every year since grade school, he has shaved his signature red hair for the St. Baldrick’s Foundation, raising money for childhood cancer research.

"I've shaved my head for 12 years straight, and the reason I wanted to do this is because I felt like I could help," Connor said when we first met him at his Shaker home over the summer. "If I could help other kids, like anyone else, I would do it."

At Ohio State, he took that commitment even further, founding the university’s first St. Baldrick's chapter and rallying classmates, athletes, and fraternity brothers to join the cause.

But while Connor is known on campus for giving back, he also stands out for another reason — one that could change the future of muscular dystrophy research.

A rare 'walking study'

Diagnosed with Duchenne at age 9, Connor is an outlier: Most kids with Duchenne lose the ability to walk by their early teens, but at 19, Connor is still on his feet — something doctors say is extraordinarily rare.

"Basically, my doctor describes me as special," Connor says.

He produces just enough dystrophin — the protein missing in Duchenne — to stabilize his muscles. Most patients produce none; Connor makes roughly 3% of normal levels, and that tiny amount has made all the difference.

And for researchers studying the disease, it makes Connor invaluable.

What Is Duchenne's muscular dystrophy?

• A rare, genetic disorder caused by mutations in the dystrophin gene.

• Primarily affects boys.

• Leads to progressive muscle weakness.

• Most lose the ability to walk by ages 10–12.

• Historically, many patients did not survive into their 20s.

• Research advancements have extended both mobility and lifespan.

  Why dystrophin matters

  Dystrophin acts like a shock absorber for muscle cells. Without it, muscles break down over time; even 1%–3% of normal dystrophin — like in Connor's case — can dramatically slow progression.

  This makes Connor what researchers call an "exception to the rule," and exactly the kind of case that can unlock new treatments. Dr. Kevin Flanigan, director of the Jerry Mendell Center for Gene Therapy at Nationwide Children's Hospital, has studied Connor for nearly a decade.

  "When I met Connor … it was quite clear he looked different from typical Duchenne," Flanigan explained. "He had a mutation that, on paper, would make no dystrophin whatsoever, yet he looked really different." 

  Flanigan notes that before any current treatments existed, walking past age 12 was rare — and living past age 20 was often considered unlikely.

  Connor's unusual stability at 19 could help researchers better understand how small amounts of dystrophin can protect muscle function — and how new therapies might replicate that effect.

  "Three percent (of normal levels of dystrophin) is sufficient for keeping you walking around the OSU campus," according to Flanigan.

  Connor’s participation in research (and his access to the medication he takes) depends heavily on NIH grants.

  "The NIH has historically been good funders of muscle disease research," Flanigan said. "One of our grants has been to survey many patients who are the exceptions to the rule."

  But those grants are now in question: The 2026 NIH budget matters because cuts could force labs to scale back or close, clinical trials may be delayed or canceled, and young researchers may leave the field due to instability. 

  For Connor, the uncertainty is deeply personal: Patients like him could lose access to experimental or specialty treatments.  

  "That’s what my doctor is nervous about," Connor said. "Maybe it gets shut down; he can’t study my cells anymore."

  Decades of progress at risk

  "When I first started, I couldn't look a parent in the eye and say that anything in trials would meaningfully impact their child's life," Flanigan said. "I can easily say that now."

  NIH funding has fueled breakthroughs that were once unimaginable, and is helping turn Duchenne from a fatal childhood disease into a condition that may one day be treated or slowed significantly. Researchers fear that pulling back support now could undo years of progress.

  Though he's the one living with Duchenne, Connor is still focused on helping others. It's who he has always been.

  Studying sports management at Ohio State, he hopes to run a Major League Baseball team someday, but he also knows he's carrying a weight not everyone sees — and that research is what keeps him moving forward.

  Despite living with a disease that is "inescapable, for now," Connor refuses to let fear dictate his future.

  "I know, in the back of my mind, things could change at any point."

  And he keeps shaving his head every year — not for himself, but for children fighting cancer.

  "Right now, I just feel like living whatever life I want to right now."