The Federal Newborn Screening Advisory Committee has voted to add Krabbe Leukodystrophy Disease to the recommended newborn screening panel.
The addition is considered a huge victory for former Buffalo Bills‘ Jim Kelly‘s Hunter’s Hope Foundation.
The vote on Tuesday was the third time Krabbe was up for a vote to be included by a panel of experts. After the recommendation passed, it now goes to the Secretary of Health for final approval and then be added to the federal list.
Hunter’s Hope calls this a bittersweet victory because the organization has fought for decades to add treatable leukodystrophies to the newborn screening panel. It hopes this victory can ultimately help families and save lives.
Jim and Jill Kelly founded Hunter’s Hope in 1997 after their son, Hunter, was diagnosed with Krabbe when he was just a few months old. Most children who have this disease do not live past their second birthday. Hunter lived for more than eight years. He died in August 2005.
Newborns are screened for several diseases after birth, which is a national requirement. The diseases in the newborn screening panel vary by state, but typically follow the federal recommendations. By adding Krabbe to the RUSP, children can be tested and treated for the disease before it develops.
Children who develop symptoms quickly lose voluntary and basic functions. For children who are tested early and can get treatment, they can live a healthy, normal life.
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