Jim Kelly's call for federal research is a winner
2009-10-20

Jim Kelly's call for federal research is a winner
New project honors his late son, Hunter
BY JERRY ZREMSKI
NEWS WASHINGTON BUREAU CHIEF
THE BUFFALO NEWS
OCTOBER 20, 2009

WASHINGTON - Former Buffalo Bills quarterback Jim Kelly fought for more than a decade to boost research into rare childhood diseases such as the one that claimed his young son's life - and Monday, Kelly won his fight, as the National Institutes of Health announced the establishment of a research program named in memory of Hunter Kelly.

The Hunter Kelly Newborn Screening Research Program, at the Eunice Kennedy Shriver National Institute of Child Health and Human Development, aims to expand medical screening among newborns. Researchers hope to increase the number of conditions that can be diagnosed at birth, thinking that this may lead to the development of new and better treatments.

"It is fitting that the NICHD's research program in newborn screening bears Hunter Kelly's name," said Dr. Susan B. Shurin, acting director of the institute. "Through the foundation established in his memory, Hunter's family has increased awareness of the need for research to expand newborn screening and worked tirelessly to ensure that routine newborn screening and treatment can be expanded to cover a far greater number of disorders than is possible today."

Kelly was ecstatic to hear that the research program would go forward and bear his son's name.

"On behalf of my wife, Jill, our daughters, Erin and Camryn, and our beloved son, Hunter, I would like to thank the NIH/NICHD for giving this special honor to Hunter and our family," Kelly said.

"It has been - and continues to be - our prayer that Hunter's short life and his suffering would one day improve the lives of others. Through the Hunter Kelly Newborn Screening Research Program, our prayers will be answered."

Hunter Kelly died in 2005 at age 8, a victim of Krabbe disease, a rare and fatal genetic disorder affecting the nervous system.

But long before Hunter's death, his parents and other family members established the Hunter's Hope Foundation to raise awareness and fund research for Krabbe disease and related disorders, and to help families whose children suffer from such conditions.

Part of Kelly's effort involved lobbying Congress to pass the Newborn Screening Saves Lives Act. Approved by Congress and signed into law by then-President George W. Bush in April 2008, the bill calls on the National Institutes of Health to set up a research program in Hunter Kelly's name.

"Hunter's legacy will live on through this program," said Rep. Brian Higgins, D-Buffalo, a co-sponsor of the bill. "While Jim Kelly is routinely remembered in Western New York for his passes on the football field, his leadership pushing for passage of the Newborn Screening Saves Lives Act is arguably his greatest victory - one that children and families will benefit from for generations to come."

Newborn screening aims to identify serious and potentially deadly conditions at birth by sampling a baby's blood, usually taken from the heel.

Such screening can play an important role in treating such conditions and in promoting research into possible cures, said Dr. Duane F. Alexander, senior scientific adviser on global maternal and child health at the NIH's Fogarty International Center.

"Through their advocacy, the Kelly family has played a leading role in promoting this research," Alexander said, "not just for the condition that affected their son, but for the full range of these often rare disorders."

Newborn screening has been conducted in many states since the 1970s, but by the late 1990s, there was a major variation in the number and types of conditions for which states tested infants, said Dr. R. Rodney Howell, special assistant to the acting director of the NICHD.

Due in part to federal efforts, mosts states now screen for 29 primary conditions, but the research under the new NIH program aims to go beyond what is done now.

The research will include efforts to identify new screening technologies, as well as research on ways to manage these rare conditions, Howell said.

About $10 million has been allocated for the research program in its first year.

In 2007, more than 4.2 million U.S. infants underwent newborn screening, the NIH said. Of these, 4,220 were diagnosed with significant hearing defects, and an additional 7,189 infants were diagnosed with biochemical abnormalities or defects in the blood protein hemoglobin.

One key test is for phenylketonuria, or PKU, a metabolic disorder that, if untreated, leads to severe mental and developmental disabilities.

"It is impossible to place a value on the lives of the infants saved," Howell said, "but a single patient who is detected and treated for PKU - who would have otherwise been profoundly delayed and have required custodial care for a normal life span - saves extraordinary costs for the child, the family and for society."