Monday, August 23, 2010

“Every Step Walk” to Support Hunter’s Hope

Pro Hall of Fame Quarterback Jim Kelly and wife Jill Invite New Jersey to Participate

Hamilton / Trenton, NJ – In an aggressive attempt to educate and fundraise on both local and national levels again this year, organizations and families throughout the country have come together with the Hunter’s Hope Foundation to assist in the effort to make Universal Newborn Screening in the United States a reality – hopefully in the near future.
Universal Newborn Screening ensures that every child born in the United States has a fair start in life by testing them for every possible disease, thereby ensuring early detection, diagnosis, and treatment of potentially devastating diseases.

According to the Hunter’s Hope Foundation, one in 100,000 live births in the United States are afflicted with Krabbe Disease, an inherited neurodegenerative lysosomal enzyme disorder affecting the central and peripheral nervous systems. Moreover, about 2 million people (or one out of 125) in the United States are carriers of the genetic deficiency that causes Krabbe Disease. If both parents carry a disease-causing mutation in the GALC gene, there is a 25 percent chance of having a Krabbe affected child with each conception.

By hosting the Every Step Walk locally at Veteran’s Park in Hamilton, NJ, “we hope to help the Hunter’s Hope Foundation raise awareness of the need for newborn screenings. Currently, there’s only one state that screens for Krabbe Disease. If caught before symptoms start to show, diseases, like Krabbe, can often be treated,” said Nichole, whose daughter suffers from Krabbe Leukodystrophy.

Nichole’s daughter was five months old when symptoms of the disease began to appear and she started to regress. “She was diagnosed in December; it was right around Christmas. She lost milestones. She can’t hold her head up anymore. She won’t be able to walk. She’s basically like a newborn, and although she eats baby food, she also requires a feeding tube to supplement what she is able to consume.”

“Each year, children die or become permanently disabled because they were born in the wrong state,” said Jim Kelly, Founder of Hunter’s Hope and Pro Football Hall of Fame Quarterback. “We have the chance to help give these children hope and a future from the moment they are born through Universal Newborn Screening. We are excited that the New Jersey community is walking for our mission on August 29th. Together, we can and will make a difference in the lives of thousands of children – Every Step we take will make a difference.”

The first Every Step Walk … the Walk for Universal Newborn Screening to benefit Hunter’s Hope will be held on August 29, 2010 at Veteran’s Park in Hamilton. Day of event registration as well as pre-walk activities begin at 9:00 am followed by the opening ceremony at 10:00 am.

Pre-registration for this non-competitive event is strongly encouraged. Walkers and teams can register online at An opening pledge of $20 counts toward an overall fundraising goal and includes lunch and entertainment. Fundraising incentives are also offered!

About Universal Newborn Screening
Newborn Screening is a state-based public health system that is essential for preventing the devastating consequences of a number of medical conditions not clinically recognizable at birth. All babies in the U.S. receive newborn screening, although all babies are not screened for the same number of diseases. By screening every baby at birth for the same number of diseases, serious mental or physical disabilities, even death can be prevented. Thousands of children die and thousands more become permanently disabled because they were not screened at birth through their state’s Newborn Screening Program. Everyday another treatable disease will take another child’s life. Every newborn in every state needs to be tested for every possible disease. One heel prick is all it takes.

About the Hunter’s Hope Foundation
Established in 1997 by Jim Kelly and his wife Jill, after their infant son, Hunter (February 14, 1997 – August 5, 2005) was diagnosed with Krabbe Leukodystrophy, an inherited fatal nervous system disease. While Jim and Jill have been blessed with the opportunity to share Hunter’s story and the hope of the Foundation named after their son all over the world – their greatest passion is to bring encouragement and hope to families in the midst of suffering. The Foundation’s mission and focus is threefold: to fund research necessary to treat and cure Krabbe Disease as well as other devastating leukodystrophies, increase newborn screening standards across the United States to obtain early detection and treatment for all treatable diseases, and ultimately Hunter’s Hope exists to inspire all parents to thank God for their children.

For details, visit: