Save The Boys: Sign the Petition for Adrenoleukodystrophy (ALD)
August 13, 2015
August and September bring about peak birth rates in the United States. Each newborn is screened for a variety of rare, potentially fatal, yet treatable disorders. However, one disease that is life-threatening in boys has not made the national or state priority list: Adrenoleukodystrophy, known as ALD.
With ALD, early detection, diagnosis, and treatment saves lives — newborn screening can detect ALD prior to the onset of symptoms in the 1 out of 17,000 babies born with ALD each year.
- The childhood cerebral form of ALD is the most severe type of the disorder and affects 1 out of 3 of boys with ALD
- -Boys with the cerebral form of ALD develop normally until symptoms appear, usually between 4-10 years of age 2
- Because symptoms are attributed to behavioral or learning problems, ALD is often diagnosed late or misdiagnosed as ADD/ADHD-If left untreated, ALD causes permanent neurological damage within 6 months to 2 years after the onset of symptoms or diagnosis of childhood cerebral disease 3
- ALD can also affect the adrenal glands (adrenal insufficiency), which puts boys at risk for life-threatening hormonal imbalances
- The Bottom Line:
Every 36 hours a baby is born with ALD. Newborn screening costs a fraction of what caring for a child with a late diagnosis does ($3.00-$5.00 per sample vs. > $7 million per child.)
Although ALD can be identified, monitored, and successfully treated prior to the first sign of disease occurring, ALD screening is still not included in the national Recommended Universal Screening Panel (RUSP). In fact, New York is the ONLY state that screens for ALD. As of 2014, 340,000 babies were screened under Aiden’s Law, and 32 tested positive.
HOW YOU CAN MAKE A DIFFERENCE:
It’s simple: we need to create awareness, and we need supporting signatures. We need moms, dads, aunts, uncles, friends, teachers and coaches (anyone who cares about the future of our young boys) to convince decision makers—the Discretionary Advisory Committee on Heritable Disorders in Newborn Children—to add ALD to RUSP on August 27, 2015.
- Seeking 100,000 signatures on our petition at: www.change.org/p/save-the-boys
- Rallying online support via hashtag #SaveTheBoys to drive ALD awareness & education
- Encouraging people to view and share our public service announcement to find out why signing our #SaveTheBoys petition is so important: http://bit.ly/1JRQ18U
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