The Newborn Screening Workshop is completed. I'm home now from Arlington, and well, I'm jumping for joy.
DRUM ROLL PLEASE!!!!! Okay, since I don't have a drum roll audio file, how about some fireworks then? ;)
The Alpha-1 Foundation will pursue a pilot study to assess the feasibility of screening newborns for Alpha-1 Antitrypsin Deficiency. WOOHOO! I'm just so excited to have been part of the process of coming to this multi-disciplinary decision in the workshop. It was an honor to present a parent's perspective, and a privilege to have contributed in the workshop overall.
I've got a great big smile on my face as I've wanted this since Grace was diagnosed in 2002. WOOHOO! It is a banner day.
The results of the workshop will be put together in an official publication and available sometime in October for those of you interested in the results. See the Alpha-1 Foundation website for further information.