The Myelin Project
The Myelin Project aims to accelerate research on myelin repair. Myelin, the white matter insulating the nerves, allows the conduction of impulses from one part of the body to another. It can be destroyed by hereditary metabolic disorders such as the leukodystrophies, and in acquired diseases such as multiple sclerosis.
Behind The Myelin Project is a multinational gathering of families struck by one demyelinating disease or another. Refusing to accept the conventional view that science cannot be hurried, they resolved to advance the moment when myelin can be restored. -- from the Introduction
The STOPALD Foundation
The Stop ALD Foundation uses entrepreneurial spirit and techniques to seek out and develop promising therapies to prevent, diagnose, and cure adrenoleukodystrophy (ALD). We do this by identifying and filling gaps in the development process and defining and delivering the resources to transform ideas into projects and projects into therapies.
ALD LIFE aims to help all affected by or interested in adrenoleukodystrophy and adrenomyeloneuropathy, whether personally or medically. We will try and help you to become Aware, Learn and Discuss the many implications of this devastating disorder.
Trying to understand Adrenoleukodystrophy and the other disorders associated with it seems nearly impossible when you consider how little is really know. But what is known, now, is that ALD has been striking families through many generations for a very long time. It is an x-chromosome related genetic defect that affects boys, men and females who are carriers.