Where the wind comes sweepin' down the plain… and IDF volunteers raise awareness for SCID newborn screening

IDF Oklahoma volunteers Sara and Jeremy Penn are on a campaign throughout their state to make parents, health department officials, and other policymakers aware of SCID newborn screening and its potential to save lives.

Last month, the couple hosted a booth at the Community Baby Shower in Tulsa, OK . They distributed information on newborn screening and SCID,  and other primary immunodeficiency diseases. Sara and Jeremy had the opportunity to speak to the whole group about their cause as well as talk to expectant mothers and care-givers individually. The duo also played a game with people called “Bobbing for Bubbles” with little bottles of bubble soap.  The game was fun for participants, but more importantly, made a lasting impression  about the  “Bubble Boy” disorder.

The Oklahoma Genetics Advisory Council recommended adding SCID to the state’s newborn screening panel at their May 19, 2011 meeting.  The Penns attended this meeting to share their personal experience combating the infections that took their daughter’s life this year because she was not immediately diagnosed with SCID and treated.  Oklahoma has not yet set a public timeline to implement SCID newborn screening.  However, since the May recommendation, another baby has been diagnosed with SCID after becoming dangerously ill in the same hospital where Sara and Jeremy’s daughter was born.

Sara expressed her frustration with the slow process of adding SCID screening in Oklahoma, “SCID screening cannot come quickly enough to Oklahoma and every other state that has yet to implement.”

With this goal in mind, Sara and Jeremy continue to  contact the Oklahoma Health Department requesting them to take action before yet another child has to suffer and risk life waiting for a diagnosis.  The Penns are determined to continue raising awareness and fighting for SCID newborn screening, using their grief and personal tragedy to fuel their dedication to this cause.  They  want  future children to have the chance at early diagnosis and a healthy life that their daughter did not.

Thank you to all of IDF’s phenomenal volunteers who are working to see SCID newborn screening in all 50 states!  Please COMMENT below to tell us about the activities you are taking to make SCID newborn screening a reality in your own state!  Comment or contact IDF through the CONTACT button at the top of the page to talk with someone about what is already happening in your state and how you can get involved.  To learn more about the SCID Newborn Screening Campaign, check out the website! http://primaryimmune.org/patients-and-families/idf-scid-initiative/idf-scid-newborn-screening-campaign