Newborn screening

Hi,

Is anyone actively working on trying to get the newborn screening for ALD part of the newborn screening panel in their state?

I want to try to advocate for this in IL (my son has PBD, which is also picked up by the test). While there are no treatment options yet for PBD, the earlier a family can know their son has ALD the more options for trying to delay the onset of symptoms.

If anyone is working on this for their state, let me know - I'd like some input on how to get started. Also, if there are any X-ALD parents who live in IL, please reply as well. Thanks!

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4 replies. Join the discussion

Maybe Janis can help ?
http://fightald.org/blog.htm
http://fightald.org/info.htm
Fight ALD
P.O. Box 3318
Vista, CA 92085
760-212-5731
janis@fightald.org

Good Luck <3 !

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Hello,
My grand daughter Reesa is right now fighting Krabbe's . We are all doing everything possible to make our Princess more comfortable.
My job is and will be to get Arizona to pass a newborn screening law. I will keep you advised of my progress and please let me know of any help and or shortcuts you have re: dealing with the State Legislators.
God Bless
Mike
thestutzmans@cox.net

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Dear prayer24.
Sorry to hear about your granddaughter :(
In regards to newborn screening - did you try to contact Hunter's Hope ? They might be able to help you...
http://www.huntershope.org/site/PageServer
Plus did you see this article ? http://www.vcstar.com/news/2012/apr/18/senate-panel-approves-newborn-testin g-bill-by/

In addition you might want to contact: Peace, Love & Trevor Foundation - http://peaceloveandtrevor.com/

and Judsons- http://www.judsonslegacy.com/krabbe-kids..

Sending ((hugs)) and prayers your way <3 Good Luck !

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Thank you. I have spoken to them and actually have a contact now in the Az state assembly to get the ball rolling.
Please visit BABYREESA.COM
Thanks
Popi

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