Every 36 hours, a newborn baby is born with adrenoleukodystrophy, also known as ALD. ALD is a genetic disease that attacks the brain and can cause blindness, deafness, loss of muscle control or even death. If detected early, ALD can be treated; however currently there is no mandatory screening for this disease. Join Brian’s Hope and the #SaveTheBoys movement by signing a petition supporting the approval of adding ALD to the Recommended Uniform Screening Panel.
Since ALD is most prevalent in males aged 4-10, early detection is vital to giving these children proper care to minimize the effects of ALD. Gene therapy and bone marrow transplants can drastically improve the quality of life of those with ALD but are most effective before symptoms begin to appear. Mandatory screening would ensure that all boys are given a fair and equal chance at receiving treatment and fighting back against ALD before treatment options are limited.
#SaveTheBoys isn’t an unrealistic goal; it has already shown results in New York, where screening began in January of 2014. Since then, 32 infants have been diagnosed with the disease or identified as a carrier of the ALD gene. Because of this early detection, these boys can be treated and live without being confined to a wheelchair—something that cannot be avoided for newborns that aren’t screened. Additionally, these girls can grow up aware that there is a 50% chance they pass on the gene to a child of their own.
Join Brian’s Hope by signing the #SaveTheBoys petition and become one of the 100,000 names needed to push for implementation of newborn screening. Together, we can make a difference and keep our newborns safe.For more information about ALD, Brian’s Hope, or the #SaveTheBoys petition, visit our website at BriansHope.org today!