This is a personal story shared by a family whose child has Argininosuccinic Aciduria (ASA).
Margaret (Maggie) Partlow was born on February 6, 2003. I had a normal pregnancy delivering only a few days late and Maggie was born a "normal" size (7 lbs, 1 oz and 18 3/4 inches long). She is my second child and was breastfed for her first year. Once we started giving her regular foods all she just wanted to eat was bananas.She gradually started trying other foods but did not seem to eat much. Her low weight we (doctors and us) were thinking may have been caused by chronic ear infections starting July 2003 through January 2004 for
a total of 8. In January 2004 we had tubes put in both ears and hoped that our little Doodles would gain weight. She started eating everything.
During her 1st birthday party, she started to get real warm. Concerned, I took her temperature to find out that it had risen to 105.8. .Read More.....
Margaret (Maggie) Partlow was born on February 6, 2003. I had a normal pregnancy delivering only a few days late and Maggie was born a "normal" size (7 lbs, 1 oz and 18 3/4 inches long). She is my second child and was breastfed for her first year. Once we started giving her regular foods all she just wanted to eat was bananas.She gradually started trying other foods but did not seem to eat much. Her low weight we (doctors and us) were thinking may have been caused by chronic ear infections starting July 2003 through January 2004 for
a total of 8. In January 2004 we had tubes put in both ears and hoped that our little Doodles would gain weight. She started eating everything.
During her 1st birthday party, she started to get real warm. Concerned, I took her temperature to find out that it had risen to 105.8. .Read More.....
We are very excited to take this opportunity to introduce NBS Connect, an interactive clinician supported patient registry. NBS Connect will serve as an internet-based support network connecting parents, guardians, and individuals with heritable metabolic disorders to clinicians, industry and academia. Emory University and the HRSA funded, Southeast NBS & Genetics Collaborative (SERC) under the leadership of Dr. Rani Singh, is partnering with Save Babies Through Screening Foundation Inc to bring this project to fruition. 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
Please click here to view the first annual Holiday Card created for a Save Babies Through Screening Fundraiser! They are really pretty, though the scan unfortunately doesn't quite do it justice based on the clarity.
The cards are 6 x 4, and come in packs of 20 with envelopes. They are selling for $11.00 and all proceeds go to the Save Babies Through Screening Foundation, a non-profit organization.
If interested, please send an email to Lisa Archetti.
The cards are 6 x 4, and come in packs of 20 with envelopes. They are selling for $11.00 and all proceeds go to the Save Babies Through Screening Foundation, a non-profit organization.
If interested, please send an email to Lisa Archetti.
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 281 • Loudonville, Oh 44842
Toll Free: 1-888-454-3383
P. O. Box 281 • Loudonville, Oh 44842
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
First Annual Holiday Card Fundraiser
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 at www.eparentdigital.com/
Events
A Family Story
NBS Connect
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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
Please call your Senators TODAY and ask for their leadership on this bill by agreeing to become a co-sponsor. Calls are much more effective than emails in this situation! If you decide to call, please ask to speak with your Senator’s Health Liaison. If the Senator needs more information or has additional questions, please direct them to Megan Thompson in Senator Kerry’s office. CLICK HERE for a list of the Senators’ contact information. I also attach other information that will be helpful when you make the calls. Thank you so much for your help as we move forward in ensuring that all of our loved ones have access and coverage for their medical foods and supplements, no matter where they live in our country.
The following documents are available to provide information pertaining to the Medical Foods legislation to provide guidance and background information for you while contacting your senators:
Cost and State Coverage Charts
HHS Medical Foods Recommendations
Medical Foods Equity Act Endorsing Organizations
Medical Foods Equity Act of 2009 legislation outline
Medical Foods Equity Act Letter from Senator John Kerry
Please call your Senators TODAY and ask for their leadership on this bill by agreeing to become a co-sponsor. Calls are much more effective than emails in this situation! If you decide to call, please ask to speak with your Senator’s Health Liaison. If the Senator needs more information or has additional questions, please direct them to Megan Thompson in Senator Kerry’s office. CLICK HERE for a list of the Senators’ contact information. I also attach other information that will be helpful when you make the calls. Thank you so much for your help as we move forward in ensuring that all of our loved ones have access and coverage for their medical foods and supplements, no matter where they live in our country.
The following documents are available to provide information pertaining to the Medical Foods legislation to provide guidance and background information for you while contacting your senators:
Cost and State Coverage Charts
HHS Medical Foods Recommendations
Medical Foods Equity Act Endorsing Organizations
Medical Foods Equity Act of 2009 legislation outline
Medical Foods Equity Act Letter from Senator John Kerry