Please join us on Friday, May 1st through Sunday, May 3rd for a relaxing weekend retreat intended specifically for families with ALD. 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 a cabin,
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(833) 525-3266
Newborn Screening
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
New Online Forum for Parents of ALD Newborns
The new online forum for Parents of ALD Newborns is designed to, “offer support as you navigate through your babies first few years of life after a diagnosis of adrenoleukodystrophy.” Click here to learn more and sign up today.
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 www.npr.org 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
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
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
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
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