The Myelin Project

This is a brief summary explaining Hersh Chadha's involvement in the Myelin Project. After watching the film 'Lorenzo's Oil', he was so moved that he made inquiries as to how he could help with the funding of research projects for Adrenoleukodystrophy (ALD) and other related diseases. Lorenzo Odone suffers from ALD, which leads to a breakdown of the myelin; the protective coating that surrounds the nerves of the brain and spinal cord. This protective coating assures the proper conduction of nerve impulses from one part of the body to another. There are eight leukodystrophy diseases as well as multiple sclerosis that attack this membrane causing blurred vision, loss of hearing, balance and speech. The Myelin Project is a research project dealing with Adrenoleukodystrophy (ALD) and other related diseases.

Mr. Chadha met Mr. Augusto Odone, Lorenzo's father who set up the Myelin Project, for the first time in September 1995 and made a commitment to send funds that he could use as he sees fit. The funds he provided went towards setting up a research unit at Madison Wisconsin. In addition, he provided funds to continue the research at the newly established Canadian Myelin Research Initiative's (CMRI) Cell Transplantation Unit, founded by Julie & Wayne Simmons, at University of British Columbia in Vancouver, Canada.

The Myelin Project is supported by a gathering of families struck by one or the other demyelinating diseases. Refusing to accept the conventional view that science cannot be hurried, they resolve to advance the moment when myelin could be restored.

They have done this by creating a framework in which researchers could co-operate effectively, by giving scientists adequate, prompt financing and continuously interacting with them. The Myelin Project includes branches located in Italy, Austria, Denmark, Canada, Switzerland, Britain, France, Germany, Spain and Dubai.

Since myelin loss leads to the reduction or blockage of nerve impulse conduction, myelin regrowth would logically restore conduction in diseases for which therapies capable of halting demyelination have already been found (e.g. Phenylketonuria, Refsum's disease); but regenerating myelin may also be beneficial in demyelinating diseases for which no effective treatment has been developed (e.g. multiple sclerosis). Indeed, the new myelin may well be able to withstand new attack by the primary demyelinating agent, either permanently or for a long period of time.

As Wayne Simmons of the CMRI says "I hope that all these years of dedicated effort pays off. With the recent breakthroughs in genome mapping and the Myelin scientists' discoveries - I sincerely believe will come a day, not too far off, when Myelin disorders will be routine and simple to treat and not lead to devastating and debilitating consequences as it does now."

For more information on Canada Myelin Research Initiative Cells and its activities please click here www.myelinresearch.com . For more information on The British Trust for The Myelin Project and its activities please click here www.myelinprobritish.demon.co.uk