PHOENIX, AZ – Founder of the Hunter’s Hope Foundation and Pro Hall of Fame quarterback, Jim Kelly, who led the Buffalo Bills to four consecutive Super Bowls, will be in Phoenix on Monday, March 30, 2009, to urge members of the Arizona State Legislature not to cut crucial funding for newborn screenings in 2010. A $1.5Million cut stands to significantly impact imperative screenings for newborn babies in the state of Arizona.  Kelly will also participate in a press event on the House Capitol lawn at 3:30pm with various legislators attending.

The March of Dimes is working hard to keep a $1.5Million appropriation that provides life saving screenings in Arizona. The Arizona House and Senate Joint Appropriations Committee convened on Tuesday, March 17 to discuss, among other issues, the Newborn Screening program’s funding including potential cuts. While no decisions were made, the cuts discussed would drastically affect the program and its ability to perform testing, diagnosis and treatment in the timeframe necessary to save newborns’ lives and prevent permanent and extensive disability according to the March of Dimes Arizona Chapter.

“With nearly 1,850 babies being born every week in Arizona, newborn screening is a vital public health activity that is essential for preventing the devastating consequences of certain metabolic, hormonal, genetic and or functional disorders not clinically recognizable at birth,” says Barbara Leff, State Senator from Paradise Valley, and member of the Senate Health Committee. “It is crucial for the state of Arizona to continue adequate funding for newborn screenings.  It not only saves lives and prevents heartache but it is also fiscally prudent. Prevention and early intervention save the state money by not having to bare the high costs associated with these diseases.”

“Arizona’s Newborn Screening program has been extremely effective and provided tremendous cost savings to the state through early screening, diagnosis and treatment of catastrophic disorders. In 2008 alone, 123 newborns were identified with one of these deadly disorders and successfully treated, thereby avoiding tremendous and life long disability or death,” says Senator John Huppenthal, from the Chandler-Ahwatukee District 20 area.

“For every newborn that is not diagnosed and treated immediately the state pays well over $1 Million annually. A part of our mission is to save these funding mechanisms so that one day every baby born will be healthy,” says Diane Zipley, State Director of Programs and Public Affairs. 

Kelly and his wife Jill, established the Hunter’s Hope Foundation after their son Hunter was diagnosed with Krabbe leukodystrophy, a rare and often fatal degenerative disorder affecting the nervous system.  Despite being told his health would decline rapidly and he would probably not live past fourteen months, Hunter lived to be eight and a half years old. 

It was when the Kelly’s learned about the inequity of newborn screening in the United States, that they realized if Hunter had been screened at birth, he may still be with them today.  They never want this to happen to another child.  Hunter’s Hope advocates for every baby born to be screened for the 54 diseases recommended by the American College of Medical Genetics plus Krabbe leukodystrophy.

“When I played for the Buffalo Bills, we played as a team. Everyone pulled together and we supported each other”, says Kelly. “We may have never won a Super Bowl, but my Super Bowl win will be when every child in every state is screened for every treatable disease.  It’s the losses that we learn from – and no loss compares with losing a child.  That’s why funding for newborn screening is so critical. You can’t attach any dollar amount to that.  The pain and suffering a child goes through, as well as the impact on the entire family, is nothing you ever want anyone to experience.  That’s why newborn screening for “Every child, Every time, Everywhere” is imperative.”

Jim Kelly, his wife Jill and the Hunter’s Hope Foundation are grateful to all of those who have made newborn screening a priority in Arizona and around the country. Kelly looks forward to a return visit and continuing the mission of Hunter’s Hope, ensuring every baby born in Arizona has a fair start at life and is screened at birth for every possible disease.

About Hunter’s Hope Foundation:

Hunter’s Hope was established in 1997 by Pro Football Hall of Fame member and former Buffalo Bills Quarterback, Jim Kelly, and 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 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.  For more information about the Hunter’s Hope Foundation visit http://www.huntershope.org/.

About the March of Dimes:

The March of Dimes is a national voluntary health agency whose volunteers and staff work to improve the health of infants and children by preventing birth defects, premature birth and infant mortality. Founded in 1938, the March of Dimes funds programs of research, community services, education and advocacy. For the latest resources and information, visit www.marchofdimes/arizona.com or for information in Spanish, http://www.nacersano.org/.