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The Stop ALD Foundation

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Houston, TX 77002
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Adrenoleukodystrophy (ALD) therapy development, awareness, & prevention.

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The Stop ALD Foundation

  • Home
  • What is ALD
    • What is ALD?
    • Diagnosing ALD
    • Treating ALD
    • Current Treatment Research
  • FAQ's
  • About The Stop ALD Foundation
    • Our Beginning
    • Mission
    • Advisory Board
    • Team
  • News
  • Resources
  • Contact Us
  • Donate Now!

NPR: Parents Lobby States To Expand Newborn Screening Test For Rare Brain Disorder

October 4, 2017 Steve Barsh
newborn-screening-1-a35f72ad2e704149a5614c846f621c9fc08102aa-s800-c85.jpg

Parents Lobby States To Expand Newborn Screening Test For Rare Brain Disorder

Kerri De Nies received the news this spring from her son's pediatrician: Her chubby-cheeked toddler has a rare brain disorder.

She'd never heard of the disease — adrenoleukodystrophy, or ALD — but soon felt devastated and overwhelmed.

"I probably read everything you could possibly read online — every single website," De Nies says as she cradles her son, Gregory Mac Phee. "It's definitely hard to think about what could potentially happen. You think about the worst-case scenario." More...

← NY Times: In a First, Gene Therapy Halts a Fatal Brain Disease2017 Million Dollar Bike Ride Pilot Grant Program: Request for Applications →

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