Wisconsin to Begin Newborn Screening for Rare Krabbe Disease

State becomes 20th to test for fatal disorder that requires early treatment

Published on Feb. 21, 2026

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The state of Wisconsin will soon begin testing all newborns for Krabbe disease, a rare and fatal neurological disorder that requires treatment within the first 30 days of a baby's life. The decision comes after years of advocacy by the family of Collin Cushmann, who died of the disease in 2019. Once the testing procedures are in place, Krabbe will become the 51st disorder screened by Wisconsin's newborn program.

Why it matters

Krabbe disease is considered "ultra rare," affecting only one in every 100,000 babies. However, it is fatal unless treated immediately, making early detection critical. The addition of Krabbe screening to Wisconsin's newborn testing panel will help ensure more infants receive the life-saving treatment they need.

The details

On Tuesday, Wisconsin Department of Health Services Secretary-designee Kirsten Johnson signed a letter officially adding Krabbe disease to the state's newborn screening program. This process will take up to two years to implement the necessary testing procedures. Once complete, Wisconsin will become the 20th state to screen for Krabbe disease.

  • In 2019, Collin Cushmann died of Krabbe disease.
  • Since 2015, Collin's family has been advocating for Krabbe disease testing to be approved in Wisconsin.
  • On February 21, 2026, Wisconsin DHS Secretary-designee Kirsten Johnson signed a letter to add Krabbe disease to the state's newborn screening program.

The players

Kirsten Johnson

The Secretary-designee of the Wisconsin Department of Health Services who signed the letter to add Krabbe disease testing to the state's newborn screening program.

Kendra Cushmann

The sister of Collin Cushmann, who died of Krabbe disease in 2019.

Kevin Cushmann

The father of Collin Cushmann, who died of Krabbe disease in 2019.

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What they’re saying

“I think that it's going to change a lot of people's lives, and it's going to be just great.”

— Kendra Cushmann, Collin Cushmann's sister (fox6now.com)

“It's a little bittersweet, because it's my last tie to the living Collin. You know, I always had that, those memories sitting with Collin at night telling him I wasn't going to quit until I saw this through.”

— Kevin Cushmann, Collin Cushmann's father (fox6now.com)

What’s next

The Wisconsin DHS said Krabbe disease testing now enters the rule-making process, which could take up to two years before testing begins.

The takeaway

The addition of Krabbe disease screening to Wisconsin's newborn testing panel is a significant step forward in ensuring more infants with this rare and fatal disorder receive the critical early treatment they need to survive. This decision comes after years of advocacy by the family of Collin Cushmann, whose tragic story has helped raise awareness and drive change.