10/28/04 - HUNTER’S HOPE FOUNDATION ANNOUNCES SIGNIFICANT ADVANCEMENT TOWARD UNIVERSAL NEWBORN SCREENING

New York State Governor, George Pataki announced yesterday to expand NY’s Newborn Screening Program. Expansion to be implemented by the Spring of 2005 will bring the total number of diseases screened at birth in NY to 44, making it the most comprehensive free screening program in the nation. This expansion is a significant milestone in the Hunter's Hope Foundation’s Comprehensive Universal Newborn Screening Awareness Campaign.

Jim Kelly became aware of newborn screening programs in the U.S. through his work with Hunter’s Hope, “In the process of researching how to make sure that all children are screened at birth for Krabbe disease, we discovered a shocking tragedy: currently, there are over 50 diseases that can be screened for at birth, yet most states screen for less than 10!”

Because of inequities in states’ newborn screening programs, it is estimated that 12,000 infants in the United States, with treatable diseases, go untreated each year; 3,000 die. With this lack of testing occurring, many children are left undiagnosed until it is too late. “Once we realized what was happening, we knew we had to make people aware of it and do something about it,” said Jim Kelly, “This issue is not just about Krabbe kids, it’s about all children.”

“A child’s chance at life should not be dependant on what state he/she is born. No child should be denied the right to a healthy start at life. And no parent should be denied the right to know that more testing could be available to their child,” said Jill Kelly.

“We applaud Governor Pataki for his commitment to children’s health and for setting New York State as a leader in Newborn Screening. We thank him for establishing an expansion to NY’s Newborn Screening Program as an example for other states to follow,” said Jim Kelly.

“Hunter’s Hope will continue our fight for Universal Newborn Screening, until all children in the U.S. are screened for all detectable diseases,” Jim Kelly added.

Jim Kelly, the former Buffalo Bill, established the Hunter’s Hope Foundation in 1997 along with his wife, Jill, 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. Their ultimate goal is to raise money to fund research efforts to identify new treatments, therapies, and a cure for Krabbe and other leukodystrophies. To date, the Foundation has awarded over $3.8 million to leukodystrophy and related neurological disease research.

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