Legislation requiring the Illinois Department of Public Health to provide all newborns with screening tests for the presence of adrenoleukodystrophy (ALD) under a new law sponsored by State Sen. Dale Righter (R-Mattoon) was signed Aug. 19 by Gov. Bruce Rauner.
“Screening for ALD at such an early stage will help save lives,” Righter said. “All too often, those with ALD are diagnosed too late for treatment to work. It’s a terrible disease, but this law helps us get out in front of it and save our children.”
According to the Stop ALD Foundation, ALD is a deadly genetic disease that affects one in 18,000 people. It most severely affects boys and men. This brain disorder destroys myelin, the protective sheath that surrounds the brain’s neurons — the nerve cells that allow us to think and to control our muscles. It knows no racial, ethnic or geographic barriers.
Sen. Righter worked on the legislation on behalf of an initiative of the Discretionary Advisory Committee on Heritable Disorders in Newborn and Children.
“ALD appears mainly in childhood, especially between the ages of four and ten years old,” Righter said. “That’s why it’s of the essence to test newborns right away. The disease comes out of nowhere. This simple test can make all the difference in keeping our children alive.”
The Illinois Hospital Association and the Illinois Department of Public Health both support the new law.
Illinois will join New York as the only states to have mandated the testing of ALD; however, there are initiatives being sought in Connecticut, New Jersey, and Florida.