Learning About Newborn Screening

I had my first Consumer Task Force call this week and all I can say is that I am incredibly humbled and honored to be part of this amazing group of mothers.  All of us shared our personal stories about how our families have been affected by newborn screening and what compelled us to apply for this task force and/or become advocates.  Some members of the task force have been advocates for quite some time and have accomplished some very impressive things.  Some members, like me, are new to the world of newborn screening advocacy, but oh-so-anxious to do everything we can to help spread the word about the testing that saves babies lives each and every day.

We also talked a little about Genetic Alliance, the organization who is sponsoring the task force.  They are a non-profit whose goal is to bring people together and improve health through genetics.  This particular aspect of their work is supported by a grant funded through the Newborn Screening Saves Lives Act.  They are now the nation's educational resource center for newborn screening information and their mission with this work is to help improve the educational model for newborn screening by bringing a public voice to the newborn screening world.

I, for one, am INCREDIBLY excited to be one of those public voices.  My family has such a great newborn screening success story that I love sharing it with anyone who has a moment to listen because maybe, just maybe, I will be able to make a difference that will one day save other children.  I'm thrilled to get started and I can't wait to see all of the good things that this passionate and talented group of moms will accomplish in the next 12 months!