“Have you just received a diagnosis of ALD through a newborn screening? Through ALD newborn screening, affected children have the opportunity to benefit from life saving treatment.” 

 

Have you just received a diagnosis of ALD through an ALD newborn screening? Below is an Adrenoleukodystrophy Overview.

 

What is ALD?

Adrenoleukodystrophy, or ALD, is a deadly genetic disease that affects 1 in 17,000 people. As it is an X-linked genetic disease, which means, it most severely affects boys and men.

How do you get ALD?

ALD disease is a genetic, or inherited, disorder. If a mother is a carrier of ALD, there is a 50% chance of passing this on to her children. If a father is a carrier of ALD, he will pass this on to his daughter. 

How is ALD diagnosed?

ALD is diagnosed through a blood test, which analyzes the amount of very long chain fatty acids, which are elevated in ALD. Genetic testing will confirm the diagnosis. An MRI diagnoses cerebral ALD.

 

Today: The ALD Alliance is counting on you

ALD Alliance (formerly Aidan Jack Seeger Foundation) needs your help with
“Save Our Babies - Vote Yes on Aidan’s Law: Eradication of Death by Zip Code”.

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23 States Testing

260 Babies Diagnosed

As of April 2021