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Wednesday, December 24, 2008

Big CF News!

North Carolina will begin mandating newborn screening for CF beginning January 2009!

This is a result of the Cystic Fibrosis Foundation's successful advocacy efforts, thanks, in large part, to my awesome readers! Click Here to read how this development was brought to life by Janice Hairr and her daughter, Savannah, who was diagnosed with CF within 2 days of her birth. This early detection has led to very positive outcomes for Savannah in her journey with CF.

NC joins a growing number of US states that are mandating newborn CF screening. Very soon, CF screening will be mandated across the country! What a great Christmas gift to thousands of unborn children!!!

Nate

24 comments:

  1. PTL! God is good!!
    Merry Christmas!! :-)

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  3. What wonderful news!!What a wonderful Christmas gift!

    It's a shame that it has taken this long!

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  4. That is indeed wonderful news. My four-month old son was diagnosed early because of newborn screenings, and our hope is that his health will be better all his life because Ohio now mandates this as part of the newborn screenings.

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  5. I know Illinois has it, I assumed all states did it....Wow that is great!

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  6. That is awesome! What a nice present to all the future little babies.

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  7. That is such a great news!
    My daughter (Molly, 12 yrs old) was born in Mississippi and at that time they didn't screen for CF. Ohhhhhhhhh how I wish they had, she wasn't diagnosed until she was 4 1/2 yrs old, I think of the damage that could have been prevented, if we'd known sooner.

    Hope you all have a Merry Christmas!

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  8. That is awsome......I wish my state had that when my kids were born. Mabye they do now. Do you know which states have it?
    Thanks for your knowledge and also all you did in Toys for Tots.

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  9. Wow!! That is amazing. Is this the first state to mandate?

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  10. MERRY CHRISTMAS! What an uplifting annoucement!

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  11. that is GREAT news! I hope that MD either has a law like this or gets one!

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  12. Great news!! To answer someone else's question, there are already many states with this mandate, including my state, California.

    Early diagnosis means so much for a CFer's future health. We were lucky that Ricky was diagnosed within a few weeks of his birth, but I know of so many people who were not. :(

    This is great, great news.

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  13. Wonderful, wonderful news. Is VA one of the states?

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  14. How awesome is that? God is still able!! I know you all are thrilled! Merry Christmas

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  15. Great news! Not sure if you knew but earlier this year Canada made the screening mandatory across the country......thrilled!!!

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  16. what more can you say to that than WOOOO HOOOOO!

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  17. Awesome news!! My great niece was diagnosed with CF when she was 2 days old, but only because they had to do surgery because of a blockage in her intestines and realized that she had CF.

    Merry Christmas!

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  18. I think this is great news! I have read you blog for awhile now and never posted anything, but enjoy you and your family through the blog. You have a countagious and encouraging faith and it is evident. Keep Christ first and it will continue! Don't let the bad guys get you down. I get frustrated when it is obvious someone has said something that doesn't need to be said.
    I have a good friend who's son was diagnosed with CF at the age of two. He is now 15. I won't go into all his medical history, I'm sure you hear many, but doing rather well considering. I think this test should be done at birth and every state should do this. I would think it would be a simple test that could save and help many lives with CF.
    That's for your blog and what you mean and do for those in the CF community!

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  19. They already have this in Australia. It's "standard" testing before a newborn leaves hospital, which means parents have the right to refuse testing, but pretty much everyone does the test.

    It's no biggie. They do a pin prick on baby's heel, and from that they get five drops of blood on a card. This is enough to test for five different disorders, including CF.

    My state also has standard screening for deafness (most babies sleep through this test, it's so gentle).

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  20. Does that mean no one can waive it? I'm not positive I think that's great news. I definitely think this service should be offered (it is in my state, and we took advantage of it), but I think of a mom I knew who waived the newborn screening. The state deemed she was endangering her child's life by doing this & removed the newborn (who was breastfed) from the home for a week to do the testing. As I said, I definitely think the service should be offered, but I hope people can waive it if they want.

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  21. That is fantastic! Hopefully, many families will be helped by this.

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  22. Hi, This is Lily from the Cystic Fibrosis Foundation. Thanks for the post! I just wanted to let everyone know that Utah also began universal newborn screening for CF last week. You can read more about it on our Web site as well as find out if your state is screening: http://www.cff.org/aboutCFFoundation/NewsEvents/index.cfm?ID=10355&TYPE=1670

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