Anne's Arts & Activities Blog

HARRISBURG – In an effort to help save the lives of children and give their families greater hope in coping with debilitating conditions, Rep. Gene DiGirolamo (R-Bucks) led the House Human Services Committee in endorsing three pieces of legislation to expand the state’s newborn screening program. “Pennsylvania tests newborns for only a very limited number of diseases, and ranks at the bottom when compared to other states,” said DiGirolamo, chairman of the House Human Services Committee. “By expanding the program so that even more diseases and conditions are tested and finding a way to fund those tests, we can help to save the lives of children who otherwise have little hope of overcoming their illnesses. By the time many of the diseases included in other states’ screening programs are detected in Pennsylvania infants, it can likely be too late. This legislation we passed today will save lives, and I’m proud to play a small part in helping to make that happen.” The committee unanimo...

The Hunter James Kelly Research Institute officially opened at the University of Buffalo Thursday night. The state-of-the-art facility is named for the son of Hall of Fame quarterback Jim Kelly and his wife Jill. Hunter suffered from Krabbe Leukodystrophy, and died in 2005 at the age of eight. The institute has a team of doctors in place to research and study diseases like Hunter’s. For more information go to HuntersHope.org . The news leader of the Twin Tiers ... since 1947

Jill and Jim Kelly, center, accept a check from Erika Bacha and Katherine Moyer of Bradford during Hunter's Day of Hope Saturday at the Buffalo Bills Fieldhouse in Orchard Park. On January 22, the girls held a fundraiser for Hunter's Hope at Byllye Lanes. It was their senior project. Photo courtesy of Barry and Sonja Bacha

A fundraiser for Hunter's Hope at Byllye Lanes and the Free Family Film Fest were a couple activities keeping people busy -- and inside -- on Saturday. Buffalo Jills cheerleader Bri Pedine (center) takes time to pose with the organizers of the Hunter's Hope fundraiser, Katherine Moyer and Erika Bacha. Bri also talked with some of the bowlers, including Harry Solarek. It's only a party if you dance to "Y-M-C-A," right? Megan Hillard is all smiles after rolling a strike. These two young bowlers were thrilled with their door prizes. Below, Bradford City Firefighters Greg Lewis and Cathy Mealy greet a couple of young movie goers during the Free Family Film Fest Saturday morning. The movie was "Harry Potter and the Sorcerer's Stone" and the pre-movie talk about about Freedom of Speech. This Saturday's movie is "Nanny McPhee Returns" and the guests will be Betty Jo Wilcox and Lee Sizemore from Strengthening Families.

The National Institutes of Health on Monday announced the establishment of a research program to enhance newborn screening, in memory of the son of National Football League Pro Football Hall of Fame quarterback Jim Kelly. Hunter Kelly died in 2005 at age 8 1/2 of Krabbe disease, a rare, fatal genetic disorder affecting the nervous system. After Hunter's diagnosis in 1997, the Kellys and their family members established the Hunter's Hope Foundation to raise awareness and fund research for Krabbe disease and related disorders (known as leukodystrophies), and to support families affected by these conditions. Jim Kelly said that the principal focus of the Hunter Kelly Foundation is to educate and advocate for expanded and universal newborn screening for all possible diseases For more on this story, go to the National Institutes of Health .

In case you missed it, Hall of Fame quarterback Jim Kelly was on The Radio Factor with Bill O'Reilly this afternoon. Kelly is in New York City to kick off a national campaign to increase awareness and advocate for universal newborn screening. He talked about his son Hunter, who was 8 years old when he died of Krabbe Disease three years ago. "Hunter was diagnosed at four months," Kelly said. "If he was diagnosed at birth we could have done something." Dan Marino, Eli Manning, Bruce Smith and Thurman Thomas were among the people who attended a kick-off event Monday night in New York. For more information, visit Hunter's Hope.org .

Jill Kelly, wife of Hall of Fame quarterback Jim Kelly, will be at the Smethport United Methodist Church during the 11 a.m. service on Sunday. She will share her test of faith and hope. Kelly is chairman of the Hunter's Hope Foundation.

The state Senate on Thursday approved legislation that would expand Pennsylvania’s Newborn Screening and Follow-up Program to include 29 “core” genetic conditions that are serious but treatable if caught early, according to Sen. Jane Orie (R-Allegheny). Orie, who sponsored a Senate version of House Bill 883, said the measure is crucial to saving lives and helping children who are born with life-threatening genetic conditions and their families. “Each and every baby born in our state deserves the opportunity for a healthy start,” Orie said. “Newborn screening is a vital public health tool that provides early identification and treatment for infants affected by certain metabolic, hormonal, genetic or functional disorders. It’s time for Pennsylvania to act on behalf of our smallest and youngest citizens and their families by supporting this bill.” Last month, the senator joined former Buffalo Bills quarterback Jim Kelly at a press conference to urge members of the legislature to approve...

World-renowned doctors, scientists and researchers will attend the 11th annual Hunter’s Hope Family and Medical Symposium being held July 9-13 in Ellicottville. The symposium will also welcome families from around the world affected by Krabbe’s disease and other leukodystrophies who are coming to Western New York to get the latest medical information on the conditions. Hunter’s Hope was established in 1997 by former Buffalo Bills quarterback Jim Kelly and his wife, Jill, after their son, Hunter, was diagnosed with Krabbe leukodystrophy.

By ANNE HOLLIDAY WESB/WBRR News Director When his son was diagnosed with Krabbe Disease, Hall of Fame quarterback Jim Kelly could have wallowed in self-pity and focused on dreams that would never come true. Instead, with encouragement from his wife Jill, he started a foundation and mounted a campaign to make sure other families don't have to go through what his did. When Hunter Kelly was born on February 14, 1997 – his famous dad's 37th birthday – the just retired NFL quarterback thought about all the things father and son would be doing together as the little boy grew up. It wasn't long before the Kellys realized Hunter "was having a lot of difficulties," he said during a news conference in Harrisburg earlier this month. "I could tell you all the problems he had but there would be a lot of tears shed," Kelly said, "because they'd be coming from me." Hunter was four months old before he was diagnosed and, by that time, it was too late for d...

Hall of Fame quarterback Jim Kelly made a visit to the Pennsylvania State Senate today to push for additional testing for newborn babies. The Newborn Child Testing Act (House Bill 883) would expand Pennsylvania’s existing newborn screening program to include the 29 “core” treatable conditions recommended by the American College of Medical Genetics and endorsed by the March of Dimes and American Academy of Pediatrics. "What we're trying to do is make sure every single state out there gives these kids a chance to dream," Kelly said on the senate floor. "When I was a little boy, I was able to dream about playing in the National Football League. My dream came true. But unfortunately, thousands and thousands of babies die every single year because they're born in the wrong state." The bill was approved unanimously by the House, and the Senate Public Health and Welfare Committee, and is awaiting action by the Senate Appropriations Committee. When Kelly's son H...