Tag: Florida

SCID Newborn Screening – Status of Implementation by State Map

With recent developments in the screening for SCID throughout the country, below is an updated map showing the status of implementation for the United States as of February 2013. Courtesy of the Newborn Screening Translational Research Network

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Florida Newborn Screening Identifies First Baby Born with SCID

  Her name is Aaliyah, and she was born on October 20, 2012, just 19 days after Florida began screening all newborns for SCID. Along with about 19,000 other babies in the first three weeks of October, Aaliyah was screened for SCID at birth. Aaliyah’s TREC test, the screening test used to detect T-cell deficiencies

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Florida begins Newborn Screening for SCID!

Florida officially began screening all newborns in the state for severe combined immune deficiency on Monday,October 1, 2012.  Thank you to all of the parent advocates, volunteers, and providers who helped make this a reality! http://www.prnewswire.com/news-releases/florida-to-test-newborns-for-scid-a-life-threatening-immune-disease-172288211.html

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A Sunny Day in the Sunshine State! Florida budget is signed making SCID screening the Law of the Land

Florida Governor Rick Scott signed the state budget into law at noon today, April 17, 2012.  Included in that budget was language that will provide funding for the inclusion of testing for SCID within the Florida Newborn Screening Program, effectively making newborn screening for SCID the law of the land!  Advocates and physicians have been

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Florida parents and advocates hopeful that Governor Scott will make SCID Screening the Law of the Land

WTSP.com, Tampa Bay’s News Leader in Florida recently reported on the story of Kye Johnson, a baby diagnosed with Severe Combined Immune Deficiency (SCID).  He has been living in the hospital for the past 9 months. Unfortunately, Little Kye was not lucky enough to be diagnosed with SCID until after his body had already been

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Florida sees Movement In The Right Direction

On Thursday, September 29, 2011 IDF Volunteer and Co-founder of  SCID, Angels for Life Foundation, Heather Smith, traveled to Tallahassee for a meeting with the Florida Surgeon General, Dr. Frank Farmer.  She was joined by Audrey and Kyle Harden, parents of a SCID baby who passed away in February 2011, whom are now pregnant with

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Live Rotavirus Vaccine should NOT be given to SCID infants!

It would be amazing if IDF could mobilize efforts and nullify all administrative issues so that newborn screening for SCID could become universal throughout the United States overnight. Unfortunately, this is not the reality of the situation and despite IDF’s efforts and the efforts of IDF’s dedicated volunteers, many states are years away from implementation

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A Father's Story

Below is the public testimony Dr. Hardeep Singh gave at the Florida Newborn Screening Advisory Committee meeting in Tallahassee on July 16. Dr. Singh shared his personal experience as a father of two children born with SCID, illustrating the importance of early diagnosis. Please share your own personal experiences and contact us to find out

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Take Action in Florida

Florida-1st Post Taylor Dahley has SCID. He’s had a bone marrow transplant and is living a healthy, productive life but the story isn’t as positive for his older brother, Brandon. Brandon was also born with SCID but unfortunately he wasn’t diagnosed until he was in the hospital and gravely illl. Brandon died at 7 months

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Welcome to the NEW IDF SCID Newborn Screening Campaign blog!

Welcome to the NEW IDF Severe Combined Immune Deficiency (SCID) Newborn Screening Campaign blog! It is amazing how many people are already aware of and working with the IDF campaign to have SCID (commonly known as bubble boy disease) added to the newborn screening panel in all 50 states. We are particularly grateful for the

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About IDF SCID Newborn Screening
Severe Combined Immune Deficiency (SCID) is a primary immunodeficiency disease. Babies with SCID appear healthy at birth, but without early treatment, most often by bone marrow transplant from a healthy donor, these infants cannot survive. It is imperative therefore that newborn screening programs are established in all 50 states.

This blog is sponsored in part by Leadiant Biosciences and PerkinElmer.

Advisory Committee Recommendation Arizona California Currently Screening Delaware Family Story FDA Florida General information IDF Immune Deficiency Foundation Legislation Michigan Minnesota New Hampshire New screening New York Pilot Program Research SCID SCID Variant Severe Combined Immune Deficiency South Dakota Special Symposium Virginia

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