Awareness

ALD Newborn Screening Family Retreat at Painted Turtle Camp

Please join us Friday, October 4th through Sunday, October 6th for a relaxing weekend retreat intended specifically for families with ALD boys identified through Newborn Screening. The retreat will be held at the famous Painted Turtle Camp in the San Gabriel Mountains of Southern California. Registration fees ($75 total per family) includes

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Newborn Screening Family Education Survey

This survey is being conducted by Expecting Health, a non-profit organization focused on engaging families and health professionals in pregnancy and newborn health: https://www.surveymonkey.com/r/P5D363H. If you agree to participate, you will be presented with an online survey. The goal of this survey is to learn about families’ needs and priorities

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September is Leukodystrophy Awareness Month

September is Leukodystrophy Awareness Month! Share your story on Facebook, Twitter, and Instagram using the hashtag #LeukodystrophyAwareness and help us spread the word to ensure that leukodystrophies become a household name. Leukodystrophies are a group of rare, progressive, metabolic, genetic diseases that affect the brain, spinal cord and often the peripheral nerves.

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