Delaware ACTION!

The Blue Hen is the State Bird of Delaware, renowned for its fighting ability and the namesake of the University of Delaware’s Fightin’ Blue Hens. IDF Volunteers in the state are taking on this celebrated Delaware fighting spirit in the name of the Newborn Screening Campaign to have SCID added to the panel of conditions for which infants must be screened at birth!

The Delaware Blue Hen

The law in Delaware is such that new legislation is not needed to add SCID to the panel of conditions for which newborns must be screened in the state.  Rather, an Advisory Committee on Newborn Screening must recommend the addition of a new condition to the Public Health Secretary, who then has the ultimate authority on whether or not to add the condition to the State’s Newborn Screening Panel.

Already the State of Delaware’s Advisory Committee has discussed the possibility of recommending the addition of SCID twice in their meetings this year!  In order to prompt the Committee to move forward with the recommendation, IDF volunteers Judy Kozulak and Donna Sawyer are taking action!

Judy and Donna have been in contact with the Newborn Screening Program in the state to find out about Committee meetings and current actions.  Both also plan to attend the next meeting of the Advisory Committee in October to give public comments on the importance of SCID newborn screening.  They have also called upon a local immunologist to attend the meeting with the volunteers in order to add medical expertise to their presentation.   The IDF volunteers are also reaching out to other groups in attempts to bolster the base of support for this important issue.

By the time these volunteers are through, Delaware will probably have to adopt the ZEBRA as its state animal!    

Are you interested in helping out with the Campaign in Delaware or in your own state?  Have you already been working to get SCID on your own state’s newborn screening panel?  Do you have a personal experience with SCID?  Please COMMENT below and contact IDF to find out how to join in the efforts!   idfscidinitiative@primaryimmune.org 

Also, check out the SCID Newborn Screening Campaign website to learn more about the background and necessity of SCID newborn screening.  http://www.primaryimmune.org/advocacy_center/scid/scid_newborn_screening_initiative.asp