ALD Connect

The Myelin Project

Über uns

The Myelin Project is an international scientific research organization aimed at accelerating clinical and translational research focused on myelin repair and to regenerate the nerve´s myelin sheath, – a process called remyelination – destroyed in a host of diseases such as multiple sclerosis and the leukodystrophies. The non-profit organization "The Myelin Project" was established in 1989 by Augusto Odone and his late wife, Michaela. Their son, Lorenzo, suffered from X-linked adrenoleukodystrophy (X-ALD), the most common of the leukodystrophies. The story of the Odones´ struggle was dramatized in the film Lorenzo´s Oil, starring Nick Nolte and Susan Sarandon, released by Universal Studios in 1992.

The project´s aims
The Myelin Project aims to accelerate research on myelin repair. Myelin can be destroyed by hereditary neurodegenerative disorders. Altogether, demyelinating diseases affect more than two million people worldwide.
It has branches in Germany, Italy, the United Kingdom as well as an active partnership with the European Leukodystrophy Association, headquartered in France.

Our mission is to:
• Fund myelin research
• Raise awareness of demyelinating diseases
• Provide information for patients and their families
• Induce scientific collaboration
• Find a cure for demyelinating diseases

Research has been focused on efforts to understand mechanisms of myelin repair, with a view to discovering therapies that will permit restoration of damaged myelin. It is anticipated that these will permit at least partial restoration of function in patients suffering from myelin loss.

Activities:
• The Myelin Project has joined forces with a new patient support and advocacy group called ALD Connect. A unique aspect of the ALD Connect approach is the transformative collaboration between patients, patients advocacy groups and academic centers. This will allow for data comparison and validation, patient feedback on research directions, and more rapid trial development because of an educated and engaged patient community.
• The Newborn Screening Project: Newborn screening of adrenoleukodystrophy (ALD) is critical in combating the illness. It has been proven that early detection is essential to effective treatment. Newborn screening can also help identify siblings and/or extended family that may be impacted.
• Using a motivated, time-conscious approach to attain specific goals, The Myelin Project has set up a Work Group from among the top international laboratories specializing in myelin repair. The Work Group includes researchers from Yale University and the University of Wisconsin–Madison in the United States, the Istituto Superiore di Sanità and San Raffaele Scientific Institute in Italy, the Hôpital de la Salpêtrière and the Institute Pasteur in France, Queen´s University at Kingston in Canada, the University of Cambridge in the United Kingdom, and the Max-Planck-Institut in Germany.

Greg Benton is the Vice-President and Director of Development & Administration at the Myelin Project.

For other net participants we can offer an expert guidance through trained staff, give an expert opinion, procure expert information and establish new contacts in the field of our work.