Newborn Screening for Adrenoleukodystrophy
In February 2016, adrenoleukodystrophy was added to the Recommended Uniform Screening Panel, which is the list of disorders that are screened at birth and recommended by the Secretary of the Department of Health and Human Services in the United States.
If your baby has received a positive newborn screening test or a biochemical diagnosis of adrenoleukodystrophy (ALD), we're here to help no matter where you are located. Please email the Leukodystrophy Center (email@example.com).
Our multidisciplinary team of healthcare professionals at the University of Minnesota Masonic Children’s Hospital collaborates with the Minnesota Department of Health Newborn Screening Program (MDH-NBS) to address the varied and long-term spectrum of clinical needs for patients with adrenoleukodystrophy.
The healthcare team includes three international experts in pediatric blood and marrow transplantation for ALD, a neurologist, a neuroradiologist, an endocrinologist, a genetic counselor, and a public healthcare coordinator/newborn screening follow-up specialist from the Minnesota Department of Health.
We offer comprehensive diagnostic evaluations, consultations, and coordinated follow-up care based upon the initial clinical encounter. Ongoing follow-up and monitoring is facilitated.
Clinical research participation opportunities are available to eligible subjects for innovative monitoring and treatment modalities.
On June 15, 2016, thanks to tireless work by Shanna and Nick Quimby, the Minnesota Department of Health (MDH) added adrenoleukodystrophy to its list of conditions for which all newborns in the state are screened. That legislation is known as The Super Gav Act.
The California Department of Public Health’s Genetic Disease Screening Program (GDSP) began screening for adrenoleukodystrophy in mid-September 2016.
Connecticut was the second state in the nation to implement a statewide screening program to test all newborns for adrenoleukodystrophy. The ALD test was implemented by the State Public Health Laboratory on July 1, 2016.
On May 1, 2018, the Florida Department of Health, Newborn Screening Program began screening all newborns for adrenoleukodystrophy. This addition to the panel of disorders screened in Florida was recommended in 2016 by the Florida Genetics and Newborn Screening Advisory Council, and funding was authorized during the 2017 Legislative session.
In 2013, New York became the first state in the United States to test all newborns for adrenoelukodystrophy. We are inspired by Elisa Seeger for her tireless advocacy, and we hope that Congress will pass “Aidan’s Law” requiring newborn screening for ALD in all 50 states.
On May 7, 2015, Kathy Switow, Elisa Seeger, and Jenny Weldon attended the Genetics Advisory Committee meeting in Tennessee. Kathy spoke about her son Blake (pictured below) and his journey with adrenoleukodystrophy and asked the committee to consider adding ALD to the newborn screening panel. Elisa spoke about her son Aidan and shared statistics from New York. Validation testing began in January 2018. It took three years, but the State of Tennessee Department of Health began screening for adrenoleukodystrophy on April 30, 2018.
The Ethan Zakes Foundation began working with the State Board of Health in 2013 to explore the possibility of adding adrenoleukodystrophy to Washington's newborn screening panel. The Washington State Department of Health added ALD to the newborn screening panel in 2018. All specimens received in the laboratory on or after March 1, 2018 will be tested.