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Fall is almost here and football season is already in full swing but did you know it is Newborn Screening and Leukodystrophy Awareness Month?!

NBS_Elmers_First_Day_of_School_GraphicWhen Hunter was born in 1997, a newborn screening test for Krabbe Disease didn’t even exist. Now, New York and Missouri screen all babies at birth for Krabbe, with more states soon to follow.

Newborn Screening is vital because treatment for Krabbe must be done before a child is symptomatic.

Elmer was the first child diagnosed with Krabbe Disease through newborn screening in New York.  He received a cord blood transplant shortly after birth, which prevented the progression of this horrible disease.

Last week, Elmer attended his first day of Kindergarten!!

It's amazing!!

Children like Elmer inspire and encourage us to continue the fight for expanded newborn screening, and research for better treatments and a cure for Leukodystrophies.

Please join us...

  • Visit our Take Action page, and contact your state lawmakers. Ask them to support expanded Newborn Screening for Krabbe and similar diseases in YOUR state.
  • Contact your U.S. Representative and Senators in support of the federal Newborn Screening Saves Lives Reauthorization Act.  This bill helps ensure that every state has the resources needed to expand their Newborn Screening Programs. 
  • Follow Hunter’s Hope on Facebook and Twitter for even more ways you can help raise awareness throughout this important month.

In just minutes, you can make a huge difference in the lives of our children.

With Hope and Prayer, 

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Jim and Jill Kelly

Through Pro Stanchions Pro Charities program, 5% of all sales of Line-King products are donated to charity, one of which is Hunter's Hope.  Please feel free to learn more about Hunter's Hope by clicking the links in the article.  


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