Our mission is to save the lives of our boys by bringing about awareness through education--to our community and medical professionals--about the early onset symptoms of X-ALD (Adrenoleukodystrophy), the simple diagnostic blood test, and treatments.
We also have information about the adult onset, AMN (Adrenomyeloneuropathy).
We were successful at adding ALD newborn screening to the Recommended Uniform Screening Panel (RUSP) which allows for early diagnosis and life saving interventive treatment for all at risk babies in the US.
This is a guide that has been put together for families who's boys have been diagnosed with ALD through newborn screening. It was developed by doctors and ALD families to ensure the best outcome for affected boys.