Newborn Screening

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: 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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Washington DC Introduces ALD Newborn Screening Legislation

Council member Brandon Todd of Washington DC introduced the “Newborn Screening Amendment Act of 2018,” which adds the test for Adrenoleukodystrophy, better known as ALD, to the list of newborn screenings that District hospitals must offer. ALD is a rare genetic brain disorder, affecting approximately one in every 18,000 people,

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ALD Mom & Board Member Janis Sherwood Featured on NPR’s “All Things Considered” for Newborn Screening Advocacy

To listen to the radio program, click here. The following article was written on by Anna Gorman: 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

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EveryLife Foundation’s NBS Initiative in Florida

Last week, the Everyday Life Foundation presented to Florida’s Genetics and Newborn Screening Advisory Council on their efforts to advance early diagnosis and treatment through robust newborn screening programs across the United States. Currently, Florida screens for every disease recommended by experts except for MPS I, Pompe, and X-ALD. The Foundation will work

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ALD Newborn Screening Update in California

We are excited to announce that we received the following message from the California Department of Public Health (CDPH) yesterday: “We are pleased to announce that starting September 21, 2016 the #California #NewbornScreening (#NBS) Program will be expanding to include routine screening for #Adrenoleukodystrophy (#ALD). State Assembly Bill 1559 mandated that the California

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Connecticut Becomes 2nd State to Implement ALD Newborn Screening

Since Jean and Dr. Jack Kelley’s son Brian was diagnosed with adrenoleukodystrophy at the age of six, the parents have advocated for a statewide screening program to test all newborns for the disorder in the hope of saving another boy’s life. Three years after a bill mandating ALD be added

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California A.L.D. Newborn Screening Program to Begin mid-September

We received word from the California Department of Public Health’s Genetic Disease Screening Program (GDSP) that adrenoleukodystrophy (ALD) screening will begin in mid-September. In 2013, The Myelin Project sponsored California Assembly Bill 1559 – authored by former Assemblyman, now California Senator Dr. Richard Pan – in order to mandate newborn screening of adrenoleukodystrophy (ALD) in California. On September 25th, 2014, Governor Jerry

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Washington State Closer to ALD Newborn Screening

The Washington State Department of Health voted unanimously in favor of adding ALD to Washington state’s newborn screening program following an advisory committee meeting that took place in January of this year. The Ethan Zakes Foundation, created by Brad and Nancy Zakes in memory of their son, Ethan, has been spearheading the effort. Their annual skateboarding fundraiser, EZ

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