Myelin.org – ALD/AMN Research, Advocacy, & News

Adrenoleukodystrophy (also known as X-linked adrenoleukodystrophy, ALD) is a rare, genetic disorder characterized by the breakdown or loss of myelin – the fatty covering surrounding nerve cells in the brain – and progressive dysfunction of the adrenal gland.  As an X-linked disorder, ALD presents most commonly in males and occurs in about one out of every 17,000...

If your child has been recently diagnosed with adrenoleukodystrophy (ALD),  you are not alone and we are here to help. Our newborn was just diagnosed with ALD. What do we do and what should my pediatrician know?   Your baby should start getting his MRI, by the age of 1, to establish a baseline. MRI’s should continue...

Lorenzo’s Oil is a 1992 American drama film directed by George Miller. It is based on the true story of  Augusto and Michaela Odone, two parents in a relentless search for a cure for their son Lorenzo’s adrenoleukodystrophy (ALD) who later founded The Myelin Project. They invented an oil treatment that is still in use to this...

Augusto Augusto Odone was born in Rome in 1933 and passed away in Aqui Terme, Italy in October of 2013. After a long career in the USA as an economist with the World Bank, he now lives in   Italy.   He has an honorary degree in medicine.  Augusto Odone and his wife Michaela  (died in 2000) founded The Myelin Project, an international scientific...