Tuesday, March 3, 2015

It's #giveRARE #day - please support #newbornscreening {@screenbabies} today

NOTE: March 3rd, 2015 was the first "Give Rare" fundraiser event - I support newborn screening and the Save Babies Through Screening Foundation; the link in this post has been updated to the SBTS donation page.  Thank you!

Today is the first ever Rare disease giving day and this is an event near to my heart; both of our children have a rare disorder called Classic Galactosemia.  Statistically it effects about 1:60,000 newborns in the United States.  Galactosemia is detected through newborn screening and without early detection it can be fatal to the infant or lead to severe complications.  Alena most likely would not have survived E.Coli Mengengitis if her newborn screen would not have come back in time.

Our happy and healthy girls

Newborn screening saved her life and MiaRosie's life -> read our story here;  Jake and Owen's story tells about what happens without early detection.

As a newborn screening advocate I support the Save Babies Through Screening Foundation; an organization whose mission is to save babies by working to prevent disabilities and death resulting from disorders detectable through newbornscreening.  Would you please join me in supporting this great organization?


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