Test All Babies for ALD - Vote Yes on Aidan’s Law
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Aidan Jack Seeger was a happy, healthy, spirited NY boy who, at age 6, suddenly developed vision and concentration problems. His parents thought he just needed glasses. He was misdiagnosed several times. His sight went entirely, then his ability to walk and talk. Eventually, doctors figured out that Aidan had adrenoleukodystrophy (ALD), a mysterious and deadly brain disease. Eleven months later, he was gone. The worst part? If the disease had been caught early, Aidan could still be alive and well today.
Aidan’s parents, Elisa and Bobby Seeger, have since made it their life’s work to save other children. ALD afflicts 1 in 17,000 people, mostly boys and men, silently ravaging their central nervous systems. Results include blindness, deafness, seizures, progressive dementia – leading to permanent paralysis or death. But there’s a solution: newborn screening of ALD. If the disease is caught before the onset of symptoms, it can be treated and, in some cases, entirely reversed. Through the Seegers’ hard work and commitment, newborn screening for ALD became law in New York State.
They are now fighting to pass “Aidan’s Law” (S. 2641 & H.R. 5453), which would require ALD screening in all 50 states. The procedure costs less than $2.50 per infant, and the price will go down as it is adopted in more states. We have no excuse not to pass this bill.
Help us save our boys. Please join us in calling on Congress to pass Aidan’s Law and require newborn ALD screening in all 50 states.
In four years of ALD screening in NY, 80 babies have been diagnosed with the disease —that’s 80 lives saved. Currently, New York, Connecticut, California, Minnesota and Pennsylvania are testing for ALD. Washington, Nebraska, Florida and Tennessee will start testing in 2018 but that leaves people in 41 states in the dark about this silent killer. We must fight for them – for their children.
Screening of ALD requires a single drop of blood taken from a baby’s heel at birth, and costs less than a cup of coffee.
Please join us in urging Congress to do the right thing, and pass “Aidan’s Law” requiring newborn ALD screening in all 50 states.
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