06/07/04 - PRO FOOTBALL HALL OF FAME MEMBER JIM KELLY TO TESTIFY IN D.C. IN HONOR OF HIS ILL SON

Washington, D.C. - If Jim Kelly’s son, Hunter, had been diagnosed right at birth with Krabbe Leukodystrophy, he might be throwing a football with his dad right now. Infants born with Krabbe Disease can be treated with a Cord Blood Transplant, which halts the fatal disease’s progression, but early diagnosis is imperative. Hunter was not diagnosed until he was 4 months old: too late for a transplantation to be successful.

That is why Kelly will be testifying in Washington DC, before the Advisory Committee on Heritable Disorders and Genetic Disease in Newborns and Children on June 8th at the Ronald Reagan Building and Trade Center, 1300 Pennsylvania Avenue NW. He wants to make sure that other children born with diseases that require early identification for effective treatment are given the opportunity for a better quality of life. Kelly will go before the committee in support of universal newborn screening. Currently, inequities in newborn screening programs in the U.S. allow for newborns to be screened for 48 diseases at birth in Hawaii while California screens for only 4. Children, like Kelly’s son, are allowed to suffer, even though there is treatment available, because of these inequities. Kelly hopes that by testifying, he will draw much needed attention to the important issue of newborn screening.

This Advisory Committee was established in 2003 with the passage of the Children’s Health Act 2000. Title XXVI of this Act, “Screening for Heritable Disorders,” establishes a program to improve the ability of states to provide newborn and child screening for heritable disorders. Specifically, the Committee advises and guides the Secretary, Tommy Thompson, regarding the most appropriate application of universal newborn screening tests, technologies, policies, guidelines and programs for effectively reducing morbidity and mortality in newborns and children having or at risk for heritable disorders.

Jim Kelly is speaking on behalf of the Hunter’s Hope Foundation he and his wife, Jill, established in 1997 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. For more information: 1-877-984-HOPE or www.huntershope.org

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