Newborn Screening Information

Did you know that the Newborn Screening program is the 4th largest disease prevention program in the United States? Not many people do, and very little seems to be generally known about this important children's life-saving program. Yet Newborn Screening for Krabbe Disease is what it will take to save the lives of children born with this leukodystrophy in the future. To learn more about Newborn Screening in general, you can read a recently published report by the United States General Accounting Office, in response to a congressional request at: www.gao.gov/cgi-bin/getrpt?GAO-03-449
To read more about the Newborn screening method that detects more disorders, Tandem Mass Spectrometry, please check out http://www.sigmaxi.org/about/news/archive.jan02.shtml

Each year, state newborn screening programs test 4 million babies for disorders that require early detection and treatment to prevent serious illness or death. Krabbe Disease requires early detection to prevent a child's death and yet Krabbe Disease is not tested in a single state, even though there is a life-saving effective treatment that exists and has already saved the lives of 8 children born with this disease. These fortunate few who have benefited from this early detection, have had their lives saved at a very high cost- the death of a sibling from Krabbe. Because they lost a child to Krabbe, they knew to test their newborn for the same disease.

Current estimates are that there are 40-50 children born per year with Krabbe Disease. This rate of incidence falls within the range of diseases that are currently tested in many states Newborn Screening programs. Although exact confirmation of this number remains elusive as there is no mandatory reporting to any federal health care program or agency.

With a life-saving treatment in existence, no child should have to die from Krabbe Disease. Children born with Krabbe could have their lives saved if there were a Newborn Screening test available. Hunter's Hope is working hard to help make that happen as soon as possible. As well as funding research to find a cure, Hunter's Hope is funding research towards the development of a universal Newborn Screening test for Krabbe.

There are also plenty of opportunities for you to get involved in helping us establish Newborn Screening for Krabbe Disease:

Call Hunter's Hope and ask for a copy of our New Hope brochure, which outlines the effective life-saving treatment for Krabbe Disease,
Inform yourself with this information and,
Inspire everyone you know to learn more: family and friends, doctors, nurses, public health and state legislative officials
Every contribution you make to the Foundation helps further our pursuit of New Born Screening

Won't you please help us in our commitment to creating public awareness of Krabbe Disease, which will help to save the lives of children born with this disease?

Newborn Screening in the News
Newborn Screening Resource Library
How you can help!

Back to Newborn Screening

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