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History
Save Babies Through Screening Foundation, whose original name was the Tyler For Life Foundation, was created in 1998 by Dallas and Tera Mize who lost their infant son, Tyler, to a treatable inherited disorder detectable through newborn screening. Had Tyler been screened properly, he likely would have lived a normal, healthy life.

Since its creation, Save Babies Through Screening Foundation has strived to provide information on newborn screening to parents and the medical community. Save Babies Through Screening Foundation is a national non-profit organization which has no paid staff and currently is operated solely by volunteers.

Mission and Purpose
The mission of the Save Babies Through Screening Foundation is to improve the lives of babies by working to prevent disabilities and death resulting from disorders detectable through newborn screening. 

Save Babies Through Screening Foundation supports, assists and advocates for disorders that are detectable through filter paper newborn screening; are unlikely to be clinically diagnosed without screening; and cause mental retardation, physical disability and/or death in childhood when left untreated.

Click on the following links for more information about us, such as the services we provide and our Annual Reports.

Although all babies get a routine newborn screening test, there are two major problems that Save Babies Through Screening Foundation addresses. One, according to Reuters Health, is that 1 in 3 positive test results is reported late, sometimes after the baby has already suffered brain damage or has died. Two, the number of disorders screened varies from location to location. In Mississippi* and Washington, D.C.,* and in fewer than 10% of various hospitals in the U.S., more than 50 disorders are screened with one specimen sample; yet most remaining hospitals are required to test for only 28 or fewer disorders. Some of the disorders are now linked with SIDS, per the Journal of Pediatrics and numerous other physicians’ publications.

Comprehensive newborn screening for most of the 50+ disorders and conditions advocated by the Save Babies Through Screening Foundation results in almost no false positives when performed by professionals who are well experienced in tandem mass spectrometry. Testing is inexpensive, and some insurance companies cover the cost. Unfortunately, there are only a handful of laboratories in the world that are experienced with comprehensive newborn screening, so many doctors simply do not know about recent comprehensive newborn screening advancements or its availability. Save Babies Through Screening Foundation educates parents and pediatric healthcare providers about available comprehensive newborn screening and the importance of reporting positive test results within 5 days** of birth.

* In Mississippi since July 1, 2003, and in D.C. since February 1, 2006
** National standards are 5 to 7 days, but studies have found that most test results are reported later than 10 days.

Goals

Save Babies Through Screening Foundation promotes its mission by the following objectives:

• Improve awareness of disorders detectable through newborn screening
• Improve awareness of the newborn screening blood test
• Facilitate communication among screening programs, support groups, and families
• Improve newborn screening guidelines and regulations
• Improve clinical identification of affected neonates
• Enhance resources for newborn screening testing; short-term follow-up care programs; and long-term follow-up programs for treatment development and research
• Promote national consistency among screening programs

Board of Directors

Jill Levy-Fisch, President ~ SCADD family
Wendy Nawn, Treasurer ~ MCADD parent
Tera Mize, Secretary ~ Galactosemia parent
Sandee Beatty, Genetics Specialist
Lisa Archetti, Packets for Parents Program ~ LCHADD parent
Micki Gartzke, Krabbe parent
Kileen Hall, VLCADD parent
Ryan McLaughlin, NKH parent
Kelly Peters, President ~ MCADD parent
Christine Presley, Clinical Laboratory Supervisor/Phlebotomy
Kimberly Symonds, Child Health Advocate

Advisors to the Board::

Directory

Medical Advisory Panel

Michael J. Bennett, Ph.D, FRCPath, DABCC
Donald Chace, Ph.D., M.S.F.S.
Paul Fernhoff, M.D.
Piero Rinaldo, M.D., Ph.D.
Charles R. Roe, M.D.
Rani H. Singh Ph.D., R.D.
Michael Skeels, Ph.D., M.P.H.
Jerry Vockley, M.D., Ph.D.
Lynne A. Wolfe, MS, CRNP, BC

Members of

Genetic Alliance
National Healthy Mothers Healthy Babies Coalition

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