Magazine article The Exceptional Parent

Newborn Screening Saves Babies, One Foot at a Time

Magazine article The Exceptional Parent

Newborn Screening Saves Babies, One Foot at a Time

Article excerpt

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Save Babies Though Screening Foundation (SBTS) was founded in 1998 by a family, following the death of their infant son from galactosemia. The Foundation's mission is to improve the lives of babies by working to prevent disabilities and death resulting from disorders detectable through Newborn Screening.

Newborn Screening is one of the nation's largest public health programs, which tests babies for disorders that are often not apparent at birth. If these disorders are not detected and treated soon after birth they may cause mental retardation, severe illness, or premature death. The importance of early identification through newborn screening is vital; every 1 in 750 babies born in the U.S.A. is born with a disorder currently detectable through optimal newborn screening methods.

The top 5 states (each screening for more than 45 of 54 currently available) are Minnesota, Mississippi, New York, South Carolina, and Wisconsin. (To learn what your state screens for visit: http://genesrus.uthscsa.edu/nbsdisorders.htm.)

Once the full panel of currently recommended tests is implemented in each state, it is estimated that more than 5,000 babies each year will be saved from a lifetime of mental retardation, developmental disorders, physical disability, or death.

Continuing to grow as an advocacy organization, the Save Babies Though Screening Foundation travels coast to coast as the ongoing expansion of Newborn Screening evolves. We remain firmly committed to championing the right of every baby to have the best start in life through optimal Newborn Screening. With the understanding that Newborn Screening is a system that does not end with the heel prick, we have expanded our mission to address issues such as insurance coverage for medical formulas and vital supplements, as well as the importance of residual dried blood spots (DBS).

From a meeting recently convened by the American College of Medical Genetics, we just learned that they are looking at the issue of residual dried blood spots as, "valuable to the:

* current screening programs;

* introduction of new screening tests; and

* expanding medical knowledge related to NBS."

The overall use of these important blood spots includes facilitating the improvement and evolution of Newborn Screening programs nationwide. It is envisioned that their uses will improve and change as scientific advances occur in the coming years. It is the desire of the group to encourage these developments with the continuation of appropriate stewardship to assure privacy and confidentiality.

With information like this, SBTS provides education and awareness by spreading the work, speaking with federal HHS health officials, working through various federal subcommittees and grant projects, speaking at professional conferences, developing presentations for use in a variety of educational formats, and educating legislators on the subject and benefits to society.

Additionally, SBTS promotes Newborn Screening awareness with distribution of educational materials, listservs, and now even further through online social networking. During the past year there were hundreds of pieces of Newborn Screening information reported out in newspapers, on the Internet, and through professional society conferences. We also now have an international voice--having recently assisted in the founding of Save Babies Through Screening UK and Canada.

To commemorate our 10th anniversary in 2008, we began new strategic initiatives including the initiation of a re-branding campaign. …

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