About Us

The British Trust for The Myelin Project is a registered charity, no. 1000614. We were founded in 1990 and since then we've been dedicated to funding research in to demyelinating diseases such as Adrenoleukodystrophy (ALD), Adrenomyeloneuropathy (AMN) and Multiple Sclerosis (MS). 

Augusto and Michaela Odone created the Myelin Project for their son Lorenzo who suffered from ALD - a rare genetic myelin disease that deteriorates myelin in the brain and central nervous system.

Although not medical doctors, the Odones developed a treatment, Lorenzo's Oil now adopted throughout the world. The story of the Odones' struggle against ALD was dramatised in the 1992 Universal Studios release 'Lorenzo's Oil' starring Nick Nolte and Susan Sarandon. 

Our ultimate ambition is to one day find a cure and stop these devastating illnesses from destroying the lives of so many young boys in the UK and around the world.