header image

The SBTS Blog

Laura Larks Elected as Vice President to SBTS Board

By admin

logo1

The Save Babies Through Screening Foundation is pleased to announce that Laura Larks was elected Vice President to its Board of Directors. Mrs. Larks has been a member of the SBTS Board since 2009 and a successful advocate on newborn screening.  Mrs. Larks’ advocacy efforts began after the birth of her sixth child, Damian, who was diagnosed with 3MCC through newborn screening.  The Larks family was surprised at this diagnosis after having five other children, and at the lack of information they were aware of about newborn screening.  Since then, Mrs. Larks has advocated at the national level for comprehensive newborn screening for all babies, and more education for expectant families. SBTS looks forward to the valuable contributions Mrs. Larks will continue to make in this new role to ensure babies have the best chance in life through comprehensive newborn screening.

About the Save Babies Through Screening Foundation
Comprised of volunteers whose lives have been touched by newborn screening (NBS), Save Babies Through Screening Foundation is the only advocacy organization in the country dedicated to NBS. SBTS aims to educate parents, pediatric healthcare providers and policy makers about available comprehensive NBS, the importance of obtaining positive or other test results requiring follow-up actions within five days of birth and the importance of prompt confirmatory testing and treatment/management when needed. The Foundation’s goal is to see that every baby born in the U.S. is screened successfully, effectively and comprehensively.

Blog posts are written by both Save Babies Through Screening Foundation representatives and others not officially affiliated with the foundation. Posts do not necessarily reflect the views of SBTS. Posts are not medical advice. Please talk to your physician.

Newborn Screening Awareness Month Advocate Toolkit

By admin

563402_536839249719931_2047225867_n

We have updated our advocacy toolkit for you to use in your local and regional efforts to raise awareness!

In the toolkit, you will find resources for spreading the word about newborn screening via social media, a sample letter to the editor for your local newspapers and links to brochures you can copy and take to events or to your doctor’s office.

Download our Toolkit HERE.

Blog posts are written by both Save Babies Through Screening Foundation representatives and others not officially affiliated with the foundation. Posts do not necessarily reflect the views of SBTS. Posts are not medical advice. Please talk to your physician.

Tagged |

Newborn Screening Awareness Month 2015!

By admin

banner 4

 

Newborn Screening Awareness Month is here and we have some great things planned for the month!

Every day you’ll find new facts, family stories and information to share on social media. We have an entire photo album of profile pictures and cover photos you are welcomed to download and use on social media accounts that you can access HERE to show your support of Newborn Screening Awareness Month!  If you don’t already you can click HERE to follow us on Facebook, and HERE to follow us on Twitter.

Baby Vida 1

We also we be giving away five, yes FIVE! Baby Vida oxygen monitors this month! A little about Baby Vida’s oxygen monitors:

“Baby Vida Oxygen Monitor- A sophisticated yet easy to use device which monitors Oxygen Level and Heart Rate wirelessly from a baby’s foot and then alarms your smartphone if either of those vitals fall outside of the predetermined ranges. Bluetooth is used to send the reading to any Android or Apple Smart Device. It is intended to give parents vital peace of mind while their baby sleeps. Baby Vida is the brainchild of Mollie Evans, the “Mom Behind the Monitor,” a mom of four who realized that concerns over knowing whether or not your baby was breaking is a troubling concern felt by most parents. 

Baby Vida was designed for babies ranging from one day to one year old. The product functions with the help of a new form of pulse oximetry technology, which utilizes light absorptive characteristics of pulsating blood flow to measure oxygen saturation. 

Tiny sensors located on the heel allow for wireless monitoring of the oxygen level and heart rate. Sophisticated algorithms were designed to deliver reliable, accurate readings of oxygen level and heart rate, taking sudden movements and normal infant behavior into consideration which significantly reduce false positives. If the oxygen levels and heart rate ever fall out of the pre-determined range, the monitor will alarm your smart device. 

Baby Vida will be available for purchase at all Walmarts nationwide on September 7, 2015.” 

Each week of September, you will find details of that week’s Baby Vida Oxygen Monitor give-a-way on our Facebook page.  Be sure to check in on September 1st, and every Sunday after for the rest of the month for details and to enter!

We have also revised our toolkit and will be releasing that this month too!

We want to thank the dozens of you that signed up to participate in the first annual SBTS Virtual 5k!  Whenever you do your walk or run in September, please share photos with us! Post them to our Facebook page and use #SBTS5k so everyone can cheer your accomplishment as well as raise awareness for newborn screening!  Stay tuned on our Facebook page, because we will also be giving away a few FREE registrations!  Medals will be received by the end of September for everyone who signed up!

We also want to thank you all for all of your advocacy and awareness efforts all year long, as well as every September.  Without all of you, SBTS wouldn’t be able to do all that we do! Thank you for helping us continue to save babies, one foot at a time.

Blog posts are written by both Save Babies Through Screening Foundation representatives and others not officially affiliated with the foundation. Posts do not necessarily reflect the views of SBTS. Posts are not medical advice. Please talk to your physician.

Tagged , , , |

Register Today for the First Annual SBTS Virtual 5k!

By admin

run bannerTo celebrate and raise awareness for Newborn Screening Awareness Month, we are hosting a virtual run/walk!Participation is simple: Register, use the summer months to get yourself ready, and then in September, pick a place and time and run or walk your 5K!

All participants will receive a finisher’s medal, and if you share a picture of yourself from your 5k on one of our social media accounts, we’ll be sure to share and thank you!

If you are new to running, we recommend that you check out the Couch to 5k program.  There you will find a 9 week program designed to take you from walking to running a 5k.

Don’t want to run, or can’t?  That’s fine too!  Walk, roll, or skip your 5k and still receive your medal!

Fees

Online Registration is available for each age group, just click the button below and register!

As you train or practice, we’d love for you to share your photos with us on Facebook and Twitter!  Use the hashtag #SaveBabies5k and help us celebrate Newborn Screening Awareness Month, raise awareness and continue to save babies, one foot at a time, one step at a time!

Blog posts are written by both Save Babies Through Screening Foundation representatives and others not officially affiliated with the foundation. Posts do not necessarily reflect the views of SBTS. Posts are not medical advice. Please talk to your physician.

Tagged , , , , , |

Join us for the 1st Annual SBTS Virtual 5k Walk/Run!

By Laura Larks

Vitrual_Run

To celebrate and raise awareness for Newborn Screening Awareness Month, we are hosting a virtual run/walk!

Participation is simple: Register, use the summer months to get yourself ready, and then in September, pick a place and time and run or walk your 5K!

All participants will receive a finisher’s medal, and if you share a picture of yourself from your 5k on one of our social media accounts, we’ll be sure to share and thank you!

If you are new to running, we recommend that you check out the Couch to 5k program.  There you will find a 9 week program designed to take you from walking to running a 5k.

Don’t want to run, or can’t?  That’s fine too!  Walk, roll, or skip your 5k and still receive your medal!

Fees

 

To register:

Click here and submit your payment online via credit card or Paypal.  BE SURE to include in the description of your donation that it is for the Virtual Run and the number of participants and their names and ages (if 24 years old or under).

To register by mail, print and fill out this form and mail to PO Box 42197, Cincinnati, Ohio 45242 and include a check or money order.  Be sure your registration is received by the deadlines above!

As you train or practice, we’d love for you to share your photos with us on Facebook and Twitter!  Use the hashtag #SaveBabies and help us celebrate Newborn Screening Awareness Month, raise awareness and continue to save babies, one foot at a time, one step at a time!

Blog posts are written by both Save Babies Through Screening Foundation representatives and others not officially affiliated with the foundation. Posts do not necessarily reflect the views of SBTS. Posts are not medical advice. Please talk to your physician.

Tagged , |

The 2nd Annual Paddle for Kids Event is here!

By admin

e09aafcb-c2fb-40a1-90ab-95606e500751

Paddle For Kids” is not only a super fun competitive race, it’s also a super fun day out for all those involved! With food, music, hula-hoop and balance competitions, this paddle festival truly has something fun for everyone and last year’s event was a great success!

Blake Real Estate hosts the annual “Paddle For Kids” races to raise awareness for newborn screening so that our babies can be cured before it might be too late. Your support will go towards efforts of making sure that every newborn child in the U.S. undergoes comprehensive and effective screening for a variety of diseases that are usually hidden at birth.

For the most up to date information pertaining to this race, please visit their Facebook Page.

Long (Elite) Race: 7 Miles

Short (Rec) Race: 3 Miles

Dolphin Dash: Kids 1/4 Mile Race

Racers will receive food & beverage with race entry! Also, two massage therapists will be on site to rub down your shoulders after an exciting morning of racing!

Race starting line is at the waterfront park next to the Safety Harbor Marina: 110 Veterans Memorial Lane, Safety Harbor, FL 34695

Try out a SURFSET fitness clinic too, clinics are at 10am, 12pm, and 1pm. Register by clicking on the blue button at the top right of the page! (it’s the same as the race registration page but you will see the options to select different clinics/activities after you click through the race registration button at the top right of this page)

Check their facebook page for daily updates: Paddle For Kids – Safety Harbor Paddle Races

 

Blog posts are written by both Save Babies Through Screening Foundation representatives and others not officially affiliated with the foundation. Posts do not necessarily reflect the views of SBTS. Posts are not medical advice. Please talk to your physician.

Tagged , |

The Clock is Ticking….

By Laura Larks

Noah and Mom

Years ago when the newborn screening system began, it all came into being because of time. Newborns needed to be screened for a baseline panel of illnesses, because waiting for the sick ones to become symptomatic before diagnosing them could prove to be too late. The disorders that they suffer from could lead to disabilities and even death if not caught early. This incredible system was then developed, allowing brand new babies to be identified early, so lifesaving treatment could begin as soon as possible.

Though, are we being as aggressive as we could be? Have we gotten so hung up on building this system to be bigger and bigger, which is an important effort that can lead to saving more and more lives that the process of how it all happens has gotten a bit sloppy? Perhaps that is too harsh, but my family’s story is the result of some short-sighted procedural policies that ultimately lead to my son’s death.

My son Noah was born in 2009 after an amazing pregnancy and childbirth. For all intents and purposes, he appeared to be a healthy little boy. We were sent home from the hospital after our customary two day stay at the hospital to begin life as a family. A couple of days later after a family dinner, Noah stopped breathing and quickly turned blue. Horrified, we called 911 and performed CPR. He was rushed to the hospital where a team of doctors and nurses desperately tried to identify what had happened and save his life. It was of no use, and my precious newborn son died that night. We were devastated, and had no answer as to what had happened. The next day his pediatrician called. Noah’s newborn screening test came back positive for MCADD, a rare metabolic genetic disorder. Noah had gone into metabolic crisis and died from his undiagnosed disorder.

Learning more about it, we discovered that MCADD is treatable with special diet and protocols just about 100% of the time. But without the diagnosis, our hands were tied. Though, why didn’t we know sooner? Come to find out, there are a number of delays that exist in the system that keep parents like me from knowing the full story of our children’s health, therefore putting them at risk. In Noah’s case, he had been born on a Friday, and the state lab that runs the test was closed over the weekend. Why is that the case, when babies are a 24-7 sort of business? They don’t stop being born just because it is a weekend or holiday, yet many labs across the country follow regular business hours rather than baby hours. Clearly, Noah didn’t have those couple of days to spare. He needed his test results as soon as possible.

Other delays such as using the US postal service to mail in test samples, rather than an overnight courier can add time. Also, some hospitals will wait to send test samples to the lab until they have enough to warrant sending everything in one big package. This practice is called ”batching.” As you can imagine, in a system where timeliness is so important, it is surprising that these sorts of practices are allowed.

Noah’s story, and the issue of timeliness as a whole was featured in a watchdog report done by the Milwaukee Journal Sentinel called Deadly Delays in November 2013. And, USA Today ran an editorial follow-up piece just this month. The fallout from having these issues brought to light publicly has been amazing. Many states have heard the message loud and clear and have bent over backwards to address and correct these problems. The governing agencies that oversee the newborn screening process in the United States have also stepped up and taken meaningful measures to re-establish best practices and to work with the states to change as well. (This recent article from the Association for Public Health Labs addresses this point.) And federal legislation was signed into law last month that places and emphasis on tracking and paying close attention to timeliness of test results (verbiage was added to the Newborn Screening Saves Lives Reauthorization Act).

It will take time to implement everything, but things are really starting to happen. So, what’s left? What still needs to be addressed?

While so many states have taken notice of this movement towards timeliness and have made so many amazing changes, many more have done nothing, leaving babies at risk. My home state of Colorado has done next to nothing to respond for example. I just had another baby, Noah’s sister, and was surprised to see that her test sample took a day longer than his did. I was supposed to be fast tracked through the system, since we know my kids are at risk of having the same genetic disorder. It begs the question, how long does it take when you are not fast tracked? (Fortunately, our daughter does not have the disorder and is doing very well!) And what if a neighboring state did make changes? Something as simple as a state borderline can make the difference between a timely test result or not.

Another issue that has yet to be addressed by the system at large is transparency of records. The report done by the Milwaukee Journal Sentinel brought up a very good point. Parents should have a clear understanding of how each of the state’s programs are run, and be given the opportunity to make appropriate choices based on their needs. This is not something that exists today. Again, using my family as an example, we know that our unborn children bear a risk of having MCADD like their brother Noah. We know that we need aggressive and timely newborn screening. Thanks to our own investigation into this system and advocacy work, we had a certain wariness with trusting the system that we have to work with in Colorado, so we secured secondary testing through a private lab called Baby Genes, who could promise faster and more thorough test results. As you can see, we clearly needed it, and were grateful to be empowered to make that choice. By-in-large though, parents are isolated from making choices like this due to this culture of secrecy in newborn screening.

I worry that there is a disconnect between the scientific community that oversees this system and the families that live and breathe the decisions that are made about how it is run. Those of us who end up impacted in a negative way by some of these choices can tell you that our lives will never be the same. Either dealing with a special needs child whose future is uncertain due to brain damage and injury that could have been avoided if the child had had proper treatment right away, or families like mine who have an empty spot at the dinner table each night where our children should be. This test is so important. It is imperative that it function properly, quickly, and thoroughly. It isn’t just yet another test sample being slid into the machine. It is innocent human life. I have met some really dedicated people who work in this space that really do get it and care deeply, and yet others who don’t quite understand and connect with the impact of the work they do each day. This is what I want them to know: Thank you so much for the hard work that you do to look after the smallest and most vulnerable citizens in our country. Please take this seriously and make it a priority. Please empower families with the information that they deserve to have about their children as quickly as possible. Every second spent identifying these kids counts.

Sarah Wilkerson, Board Member, Save Babies Through Screening Foundation

 

Blog posts are written by both Save Babies Through Screening Foundation representatives and others not officially affiliated with the foundation. Posts do not necessarily reflect the views of SBTS. Posts are not medical advice. Please talk to your physician.

Tagged , , , |

SBTS: Packets for Parents Program

By admin

Supplemental Newborn Screening

Save Babies Through Screening Foundation’s Packets for Parents program provides free supplemental screening packets to families in need.  This year, the importance of this resource for families was highlighted by the Milwaukee Journal Sentinel’s Series ‘Deadly Delays‘ which brought to light the delays and issues with newborn screening programs in state’s around the country.

Please take some time to share this resource program with expectant families in your life, and consider making your tax deductible donation to SBTS before the end of the year.  We thank our generous donors to this program, including Chameleon John, that allow us to continue to provide supplemental screening packets to families around the country.

IMG_0732Chameleonjohn.com is a one-stop website that provides online coupons, promo codes and daily deals from a variety of online retailers.

Blog posts are written by both Save Babies Through Screening Foundation representatives and others not officially affiliated with the foundation. Posts do not necessarily reflect the views of SBTS. Posts are not medical advice. Please talk to your physician.

#GrouponSaysThanks to Save Babies Through Screening Foundation

By Laura Larks

groupon-coupons-500x500

Groupon Coupons is introducing #GrouponSaysThanks, a program to thank non-profits that impact their customers’ lives.  #GrouponSaysThanks has featured SBTS on their main website banner for the day, and in their blog!

This is a great way for SBTS to raise awareness and reach more people to help educate them on the importance of Newborn Screening!

Visit Groupon Coupons today to shop, and see how they are assisting us in raising awareness!

Blog posts are written by both Save Babies Through Screening Foundation representatives and others not officially affiliated with the foundation. Posts do not necessarily reflect the views of SBTS. Posts are not medical advice. Please talk to your physician.

Tagged |

Canadians Celebrate Newborn Screening Awareness Month

By Laura Larks

Canada

September is a busy month for many families; it is back-to-school season after all. According to data from Statistics Canada, it is also one of the biggest months for births in the country! This makes September the perfect time for newborn screening awareness month, an initiative aimed at spreading the message about how newborn screening can help babies get the healthiest start in life.

Newborn screening is the testing of babies shortly after birth for treatable diseases that are not usually apparent in the newborn period. Although most babies look healthy at birth, they may be at risk of having serious health problems if they have a disease that is not detected and treated early.  Early detection of these diseases through newborn screening prevents serious health problems and can even save lives. Newborn Screening Ontario, the program that coordinates newborn screening in the province of Ontario, tests for 29 diseases including metabolic diseases, endocrine diseases, Sickle Cell Disease, Cystic Fibrosis and Severe Combined Immune Deficiency. During September, Newborn Screening Ontario (NSO) is running a social media awareness campaign to increase the profile of the 29 rare diseases for which they screen.

Using their Twitter account, @NBS_Ontario, NSO will be dedicating each day of September to put a spotlight on one of the diseases screened. Information about the disease, importance of early detection, family stories and resources will be shared. As members of the newborn screening community, NSO encourages you to join the Twitter conversation (using the hashtag #NBSMonth of course!) and help spread information and awareness of the importance of newborn screening for these serious diseases. Together, we can help babies put their best foot forward!

Blog posts are written by both Save Babies Through Screening Foundation representatives and others not officially affiliated with the foundation. Posts do not necessarily reflect the views of SBTS. Posts are not medical advice. Please talk to your physician.

Tagged |