Washington, DC - Members of Congress heard from Jim Kelly in Washington today. The former Buffalo Bills quarterback asked a congressional briefing to back the "Newborn Screening Saves Lives Reauthorization Act."
Kelly spoke at the request of Western New York Congressman Chris Collins. He asked for extension of the act first passed in 2008 to help ensure that all newborns are screened for genetic conditions and diseases. Before its passage, only ten states required such testing. Kelly said that meant children with conditions that could have been managed if found right away often died because they were born in the wrong state.
The act set uniform testing standards and offered funding to states that implemented them. Fourty-four states and the District of Columbia now require a blood test screening newborns for about 30 conditions. The extension would extend the funding through 2018.
Kelly's son, Hunter, suffered from the genetic condition known as Krabbe's disease which was ultimately fatal. It led Kelly and his wife to establish the Hunter's Hope Foundation and become advocates for screening and treatment of childhood genetic conditions.