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 Illinois State Senator Dale Righter (R-Mattoon) was signed August 19th by Governor 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.”
ALD is a deadly genetic disease that affects one in 18,000 people. It more 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 muscles.
“ALD appears mainly in childhood, especially between the ages of four and ten.” Righter added. “That’s why it’s essential to test newborns. This simple test can make all the difference in keeping our children alive.”
The United Leukodystrophy Foundation, Illinois Hospital Association, and Illinois Department of Public Health support the new law.
Illinois joins New York as the only states to have mandated the testing of ALD; however, initiatives are underway in Connecticut, New Jersey, Florida, and California.