Senator Hillary Clinton Welcomes Senate Passage of the Newborn Screening Saves Lives Act

Legislation Will Create the Hunter Kelly Research Program at the National Institutes of Health

December 14, 2007 -- Washington, DC—Senator Hillary Rodham Clinton (D-NY) today welcomed the Senate’s passage of the Newborn Screening Saves Lives Act, which she introduced along with Senators Christopher Dodd (D-CT) and Orrin Hatch (R-UT) earlier this year. The measure will create the Hunter Kelly Research Program at the National Institutes of Health (NIH), which will continue vital research in improvements to screening technology and treatments.

“Every child must have access to early screening for illnesses, and families facing these challenges must receive accurate diagnoses and appropriate treatment. I am pleased that my Senate colleagues have recognized the importance of this legislation, which will help to advance the great work that Jim and Jill Kelly have undertaken to strengthen newborn screening and expand access for families,” said Senator Clinton.

The Newborn Screening Saves Lives Act would create the Hunter Kelly Research Program at the NIH. This program, named after Hunter Kelly, son of former Buffalo Bills Quarterback Jim Kelly and his wife, Jill, will continue vital research in improvements to newborn screening technology and treatments for conditions which can be detected through such screening, but currently have no effective medical interventions. In 1997, the Kellys established Hunter’s Hope Foundation after their infant son, Hunter, was diagnosed with Krabbe Leukodystrophy, an inherited, fatal, nervous system disease. The Foundation is the Kelly’s life long commitment to increase public awareness of leukodystrophies as well as to increase the likelihood of early detection and treatment.

Senator Clinton has long been an advocate for improving access to newborn screening. In the 109th and 110th Congress, she introduced the Screening for Health of Infants and Newborns (SHINE) Act of 2007, to create a clearinghouse of newborn screening information to increase understanding of newborn diseases and screening services and improve efforts to develop new screening tools for additional life-threatening disorders. These provisions were incorporated into the Newborn Screening Saves Lives Act.

Source: Senator Hillary Clinton

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