07/08/04 - HUNTER’S HOPE FOUNDATION TO MEET WITH STATE REPRESENTATIVES IN ALBANY ABOUT NEWBORN SCREENING IN NEW YORK

Albany, NY - If Jim Kelly’s son, Hunter, had been diagnosed 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 detection is imperative. Hunter was not diagnosed until he was 4 months old: too late for a transplant to be successful. A similar story occurred with a Westchester child born to Peter and Jill Fisch - their son Matthew, was diagnosed at 3 years of age with SCAD; if he had been diagnosed at birth, the disease, which is a rare metabolic disorder, could have been treated.

This is why Kelly’s Foundation, Hunter’s Hope and Jill Fisch of Matthew’s Mission have joined forces to meet with officials at the State Capitol (Room 233) in Albany on June 9th at 10 am. Hunter’s Hope and Matthew’s Mission want 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. 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. Of the 61 diseases available to be screened for at birth, New York screens for only 11. Children, like Hunter Kelly and Matthew Fisch, are allowed to suffer because of these inequities even though there is treatment available. The Hunter’s Hope Foundation and Matthew’s Mission hope that the meeting on July 9th may help change this.

New York officials attending this meeting will be: Mark Kissinger, Secretary for Health and Human Services; David Wollner, Assistant Secretary for Health and Human Services; Dennis Whalen, Executive Deputy Commissioner; William VanSlyke, Deputy Commissioner for Administration and Public Affairs; Lawrence Sturman, M.D., Ph.D., Director, Wadsworth Center; Kenneth Pass, Ph.D., Deputy Director, Division of Genetic Disorders, Wadsworth Center. From Hunter’s Hope: Jacque Waggoner, Chairman of the Board; Micki Gartzke, Director of Education and Awareness; Sarah McNerney, Newborn Screening Taskforce and Jill Fisch, Hunter’s Hope volunteer and President of Matthews Mission. Hunter’s Hope is also meeting with Dr. Antonia C. Novello, NY State Health Department Commissioner.

Kelly established Hunter’s Hope in 1997 along with 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 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.
For more information on Matthew’s Mission: 914-588-1121

Back to Press Releases Index