Scope and Strategies

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, which are treatable, mainly through restricted diets). 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 attack by the primary demyelinating agent, either permanently or for a long period of time.

Strategies

To attain its objectives, The Myelin Project relies on three major strategies: prompting researchers to work as a team and coordinating their research efforts, promoting interaction between researchers and laypeople, and rapid financing of practically oriented experiments.

The annual meetings of the Work Group as well as several teleconferences during the year provide a forum for exchanging information on member laboratories' respective work programs. They also serve to establish or strengthen personal ties among participating researchers, who now have come to see themselves as teammates rather than rivals. Today researchers visit each other's laboratories and join forces to conduct Project-financed experiments. They also exchange papers on the progress of their experiments continuously, even before publication.

Interaction between researchers and laypeople has been achieved at different levels. The presence of informed representatives of the families at scientific meetings (a quiet reminder that the objective of medical research is to save human lives) has served to provide researchers with increased motivation and focus. In some instances, we have helped researchers solve practical problems (e.g., assistance in locating and obtaining rare animal models).

The Myelin Project staff makes it a point to process requests for experiment funding rapidly—in a matter of weeks, rather than years. Two factors contribute to cutting down processing time:

• Proposals are reviewed within the Work Group, rather than by external committees, with the occasional addition of one outside reviewer. Reviewers are given a 3-week deadline for sending in their comments.

• The Myelin Project is managed in a businesslike, "no red tape" fashion. Being victims themselves, or relatives of victims of a demyelinating disease, the members of our boards of directors are naturally committed to moving research along at the fastest possible pace.

 

Last but not least, The Myelin Project is not a foundation in the traditional sense. We are not here to stay, but are working very hard to put ourselves out of business and demolish the project as soon as possible.

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