For Immediate Release
April 29, 2008

KDHE Office of Communications, 785-296-0461

Governor Sebelius, Hunter’s Hope Foundation Celebrate Expanded
Newborn Screening in Kansas

Jim Kelly, NFL Pro Hall of Fame quarterback and founder of the Hunter’s Hope Foundation, joined Kansas Governor Kathleen Sebelius and Senator Vicki Schmidt at a ceremony in the Statehouse today to celebrate the upcoming expansion of newborn screening in Kansas.

In 2007, the Kansas Legislature passed legislation expanding newborn screening from four to 29 tests. The expanded screening will begin July 1, 2008.

The Kansas Newborn Screening Program began in 1965 with PKU screening. Since that time, screening for galactosemia, hypothyroidism, and disorders of hemoglobin have been added. Newborn screening is available to all infants born in Kansas and is done shortly after birth.

While most infants look perfectly healthy, there are some diseases that aren’t visible. Newborn screening looks for rare but serious disorders.

“The expanded screening will help find babies with these disorders as soon as possible so that treatment can be started very early,” said Governor Sebelius. “Babies afflicted with most of these conditions can be treated and live normal, healthy lives when diagnosed early.”

Early diagnosis and treatment of affected infants can not only result in normal growth and development, it can also reduce the significant human and financial costs for families and for society. The CDC has estimated that lifetime costs for medications, hospitalizations and special education for just one affected child can exceed $1 million when disorders are not detected early.

Jim Kelly and his wife Jill established Hunter’s Hope Foundation in 1997 after their infant son, Hunter, was diagnosed with Krabbe leukodystrophy, an inherited, fatal, nervous system disease. The Foundation is the Kellys’ lifelong commitment to increase public awareness of leukodystrophies as well as to increase the likelihood of early detection and treatment.

The major goal and highest priority of the Hunter’s Hope Foundation is that every newborn in every state will be tested for every possible disease, saving the lives of thousands of children through newborn screening programs.  The Foundation also strives to fund research efforts to identify new treatments, therapies and a cure for Krabbe and other leukodystrophies.

More information about newborn screening in Kansas can be found at Information about the Hunter’s Hope Foundation can be found at