(Sacramento) -- Doctor Richard Pan, Democratic Assemblymember from Sacramento, has authored legislation to add Adrenoleukodystrophy, or ALD, to the list of genetic disorders all California infants are screened for when they're born. Dr. Pan says Assembly Bill 1559 can save a lifetime of debilitating problems for a child by properly diagnosing and treating ALD before its symptoms appear. Dr. Pan says other states already screen for ALD and a federal advisory committee has recommended ALD be added to the newborn screening list in all states. Here's more in this Assembly Access video. http://www.asmdc.org/pan
On January 16, HRSA's Secretary Advisory Committee (SAC) unanimously voted in favor of moving ALD newborn screening forward to an external evidence review committee. Dr Jerry Raymond, Pediatric Neurologist at University of Minnesota Medical Center, Fairview, and Dr. Amber Salzman, President of The Stop ALD Foundation, spoke at the meeting's public comment section. Over the next 2 years, the External Review Committee will review the disease, review the newborn screening test, understand what happens when a newborn would be identified to have ALD, and look at the therapies. A recommendation will then be made to the SAC whether ALD should be added to the Recommended Uniform Newborn Screening Panel (RUSP). The Stop ALD Foundation initiated the process to get ALD added to the RUSP starting September 2012 understanding this was a lengthy and complex procedure. We remain committed to ensuring that all newborns are screened for ALD so treatment can be applied early, saving countless children and families from suffering from a treatable disease that most often is diagnosed too late.
New York State to screen newborns for Adrenoleukodystrophy
BY: Metro Source Staff | April 03, 2013
ALBANY - In approving the 2013 budget, Governor Cuomo has approved funding for Aidan’s Law, a law that adds Adrenoleukodystrophy (ALD) to New York’s Newborn Screening panel.
The law is named for Aidan Seeger, a boy from Brooklyn, NY who suffered from the disease. Seeger passed away from ALD in 2012 at seven years old. ALD is a Leukodystrophy, as is Krabbe, the disease that Jim Kelly’s son, Hunter, suffered from.
ALD is an inherited metabolic disorder, which affects the nervous system and is usually fatal if not treated before symptoms appear. This devastating disease has an estimated incidence of 1 in 17,000 in boys. If untreated, those affected lose all voluntary muscle function, as well as vision and hearing, and eventually die. Read more >>