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New states screening all newborns for SCID – Utah and Pennsylvania!

Beginning July 1, 2013 two new states will be added to the list of states currently screening for Severe Combined Immune Deficiency.  Pennsylvania's Newborn Screening and Follow-up Technical Advisory Board recommended the addition of SCID to the mandated follow-up panel. With the approval of the Pennsylvania Department of Health, SCID will be added to the list of diseases for which follow-up services are required for newborn children with abnormal, inconsistent, or unacceptable screening test results effective. IDF volunteers Holly Warmus and Brita Adams met with the Department of Health along with IDF staff and physicians from the state to advocate for this essential screening. IDF has been working with the Pennsylvania Medical Society (PAMED) for over a year to ensure that the state had the information necessary to move forward with SCID newborn screening.  To read PAMED's press release about SCID newborn screening go to


Jill Heaps with her daughter, Emily who is diagnosed with SCID

At the same time, the news from Utah confirms that the state will also begin screening for SCID on July 1, 2013.  IDF advocates in the state, Jill and Matt Heaps and Deni Berger along with Elisabeth Fish, from Fishes for Marrow Wishes, gave testimony and contacted state health officials in support of SCID screening.  In July 2012, these ladies met with the Newborn Screening Advisory Committee and Genetic Advisory Committe to share their stories of how a life without newborn screening has impacted their children born with SCID.  The Committee voted unanimously at that meeting to add SCID to the newborn screening panel in Utah!  Now, almost a year later, this is becoming a reality.  To read more about the Heaps and their fight to see SCID screening begin in Utah, please see the article in the Salt Lake City Tribune

Thanks to these amazing advocates throughout the country, SCID newborn screening is now a reality in 15 states! To learn more about what you can do in your state, please visit the IDF SCID Newborn Screening Campaign page at

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