For those of you who do not know. My family has spent the last 3 years advocating for Expanded Newborn Screening here in Oregon. This last legislative session we had a bill pass to mandate The Oregon Health Authority/Newborn Screening Lab to research the best method and fiscal reports for screening for Krabbes Disease. We were even invited to tour the newborn screening lab. As of today, the NBS lab continues to research the two methods that exist for screening for Krabbes Disease. They have till March 2015 to report back to legislation. I pray that it will not take that long. I am in constant contact with the Director of the lab in hope to report their finding to legislation in the 2014 session. That being said, here is some great news. OHA recently nominated me as a voting member to a newly created council. Here is a blurb from a recent email I received. I am pleased to appoint you to a two-year term on the Oregon Health Authority Newborn Screening Advisory Council, effective January 1, 2014. This new Council will play an important role in advising our agency on future directions in newborn screening. ..................Can I do the Happy Dance? Time to Celebrate.......
Posted on: Tue, 03 Dec 2013 05:40:57 +0000
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