This is a personal story shared by a family who lost a child to
undiagnosed Medium Chain Acyl-CoA Dehydrogenase
Deficiency (MCADD).
She was born on May 21, 1977. A perfectly healthy, brown eyed, brown haired little girl. She was my firstborn and I was very young, I also knew that I was very inexperienced. But we would meet this challenge together.
We had all the things and experiences any new parent can expect. The sitting up, the crawling, then walking. We made all our visits to the pediatrician, and all seemed well. However, just before her second birthday she became ill. Read More.....
undiagnosed Medium Chain Acyl-CoA Dehydrogenase
Deficiency (MCADD).
She was born on May 21, 1977. A perfectly healthy, brown eyed, brown haired little girl. She was my firstborn and I was very young, I also knew that I was very inexperienced. But we would meet this challenge together.
We had all the things and experiences any new parent can expect. The sitting up, the crawling, then walking. We made all our visits to the pediatrician, and all seemed well. However, just before her second birthday she became ill. Read More.....
Actor Scott Baio (Charles in Charge, Happy Days) and his wife Renee may be more high profile that most couples. But they share an experience common to many first time parents when their child Bailey was born and screened positive for a life threatening metabolic disorder detectable through newborn screening. Naturally, they were scared and didn't know where to turn. Further tests showed that their newborn was healthy but other parents may not be so lucky. Their experience led them to create the Bailey Baio Angel Foundation. You can visit their foundation's website at baileybaioangelfoundation.com
View the new Public Service Announcement
View the new Public Service Announcement
The mission of the Save Babies Through Screening Foundation is to improve the lives of children by working to prevent death and disabilities resulting from disorders detectable through newborn screening tests. The Foundation is a leader in the national grassroots advocacy movement, media awareness and actively participates on local, state and federal levels to improve newborn screening. The Foundation’s goal is to see that every child born is screened successfully, effectively and comprehensively. Read More
At the Celebrity Baby Yard Sale held by the Bailey Baio Angel Foundation on May 30, 2009, Scott and Renee' Baio along with Jill Levy-Fisch, the President of the Save Babies Through Screening Foundation, were interviewed by Look To the Stars regarding the Bailey Baio Angel Foundation and Expanded Newborn Screening. This is a great, informative video!
© 2008 Save Babies Through Screening Foundation. All rights reserved.
The Save Babies Through Screening Foundation is a not-for-profit organization recognized as tax-exempt under Internal Revenue Code section 501(c)(3).
Our mission is to improve the lives of children by working to prevent death and disabilities resulting from disorders detectable through newborn screening tests.
The Save Babies Through Screening Foundation is a not-for-profit organization recognized as tax-exempt under Internal Revenue Code section 501(c)(3).
Our mission is to improve the lives of children by working to prevent death and disabilities resulting from disorders detectable through newborn screening tests.
Save Babies Through Screening Foundation, Inc.
P. O. Box 42197 • Cincinnati, Oh 45242
Toll Free: 1-888-454-3383
P. O. Box 42197 • Cincinnati, Oh 45242
Toll Free: 1-888-454-3383
Currently over 4 million babies are born every year in the United States. Even though every newborn born in the United States receives a newborn screening test, how many diseases are screened for is determined by the state a child is born in. Thus, where a child is born can determine whether or not an affected child lives a healthy, normal life. Without proper screening affected children will likely suffer mental retardation, physical disability or even death. Most affected children can lead normal, healthy lives when diagnosed and started on treatment shortly after birth. Read More
In The News
The Baio Family Advocates for Comprehensive Newborn Screening
The Save Babies Through Screening Foundation is the only national non-profit organization devoted exclusively to the advocacy of newborn screening.
Newborn Screening: A Test That Can Save Your Baby’s Life
Our new newsletter is available for viewing. Click Here. If you would like to be put on our mailing list, please send an email to email@savebabies.org.
Jill Levy-Fisch and Micki Gartzke have recently written co-authored an article which is in Exceptional Parent magazine this month! This article is available through the magazine’s website Check it out here.
Events
A Family Story
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Recent Event: Celebrity Baby Yard Sale in Los Angeles
URGENT ACTION NEEDED!
We need your help. Families, adults with Inborn Errors of Metabolism, and medical professionals have come together in an incredibly energetic and focused manner this past year to work on creating federal legislation to mandate that insurance companies provide coverage for medical foods and supplements (i.e. formula and low protein foods). Our efforts are beginning to pay off with a proposed bill called the Medical Foods Equity Act of 2009 through the leadership of Senator Kerry’s office. We now need to help Senator Kerry’s office by finding co-sponsors for this groundbreaking legislation. Senator Kerry will be introducing the Medical Foods Equity Act very soon, which is based on recommendations from the HHS Advisory Committee on Heritable Disorders in Newborns and Children You can view updates and information on the bill by visiting www.thomas.gov and searching for bill number S2766. Read More....
Please Help! Your Support is Needed!
Our Sponsors
Astoria-Pacific International
Click here to learn how their sponshorship is helping us support our mission!
Click here to learn how their sponshorship is helping us support our mission!
“The Doctors” Segment on Expanded Newborn Screening
SBTS is pleased to share this segment from “The Doctors” television show dedicated Comprehensive Newborn Screening (CNBS). This segment, which aired last year, features Scott and Renee Baio and their daughter Bailey, sharing their experiences in CNBS and advocating for universal CNBS.
SBTS worked closely with the show's producers to ensure that the most crucial and accurate information about newborn screening was shared with the show’s wide audience across America.
View 'The Doctors' Segment on Expanded Newborn Screening for Quicktime!
View 'The Doctors' Segment on Expanded Newborn Screening for Windows Media Player
SBTS is pleased to share this segment from “The Doctors” television show dedicated Comprehensive Newborn Screening (CNBS). This segment, which aired last year, features Scott and Renee Baio and their daughter Bailey, sharing their experiences in CNBS and advocating for universal CNBS.
SBTS worked closely with the show's producers to ensure that the most crucial and accurate information about newborn screening was shared with the show’s wide audience across America.
View 'The Doctors' Segment on Expanded Newborn Screening for Quicktime!
View 'The Doctors' Segment on Expanded Newborn Screening for Windows Media Player
Parent Guide to Newborn Screening Pamphlet
The Save Babies Through Screening Foundation is pleased to announce the availability of an updated Parent Guide to Newborn Screening pamphlet which can be used to help parents learn about why NBS is important for their family. This brochure is available by clicking here, and is also available in hard copy. To order copies of the brochure for advocacy and awareness purposes, please contact Jill Levy-Fisch at jill@savebabies.org.
WI Public Health Lab Identifies first SCID baby using new TREC Assay!
Click Here for more information!
Click Here for more information!
Upcoming Event:
Scott Baio's Birthday Charity Gala!
On September 26, 2010, Scott and Renee' Baio will be holding a charity gala to celebrate Scott's 50th Birthday while raising funds and awareness for the Bailey Baio Angel Foundation. Details can be found here and tickets are available on their website for purchase through paypal.
Donations are needed for their silent auction. Please click here for details on donating to this worthy cause!
Scott Baio's Birthday Charity Gala!
On September 26, 2010, Scott and Renee' Baio will be holding a charity gala to celebrate Scott's 50th Birthday while raising funds and awareness for the Bailey Baio Angel Foundation. Details can be found here and tickets are available on their website for purchase through paypal.
Donations are needed for their silent auction. Please click here for details on donating to this worthy cause!
Next week, the House Appropriations Subcommittee on Labor/Health & Human Services/Education (LHHS) will consider FY 2011 funding for NIH. It is important to position the agency along a path of sustainable, predictable growth. Congress needs to hear that message from you NOW. Please go to click here to email your Representative today and ask that s/he support $37 billion for NIH in the fiscal year 2011 Labor/HHS/Education Appropriations bill. Together, we can make a difference for science!
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Click here to register to receive emails and announcements from Save Babies!!
Check out this great interactive Newborn Screening tool!
