15.1. The Myelin Repair Foundation

At the age of 20, Scott Johnson was diagnosed with multiple sclerosis (MS), a degenerative neurological disorder that affects more than 2.5 million people worldwide. At the time, he was told he would have to wait 30 to 50 years for an effective therapy. Frustrated by the slow pace of research and treatment development, Scott founded the MRF in 2002.

MRF states that its primary goals are to "speed the time it takes to discover, develop, and deliver treatments to multiple sclerosis patients who simply can't afford to wait."^[] The focus of the MRF is myelin repair, a promising new area in MS research that was receiving little attention or funding. Myelin, a substance that coats nerve axons and facilitates electrical conductivity, deteriorates in patients with MS.

The challenges facing Scott Johnson and others searching for a treatment for MS are complex and multifaceted—not unlike those in most early-stage research in biomedicine. Biomedical R&D outputs have been flat, if not decreasing, in recent years. The average cost to develop a new drug has increased from under $500 million to over $1.2 billion, while the time to market has doubled to 12 years. But before potential new drugs or therapies make it to the commercial labs of the big pharmaceutical companies for development and trials, viable drug targets must be identified.

Much of this early-stage research to identify promising targets takes place in the labs of academia. Organized for creativity in fundamental research—and established within the context of the academic career path—these labs can inadvertently slow the pace of innovation. Because academics are rewarded for being the first to publish original ideas, there is little incentive to share findings. This system has encouraged isolation and a lack of trust, driving some scientists to withhold publication of important intermediate results, sometimes for years, until the time is "right." As a result, innovation and discoveries happen sequentially, with scientists able to build on each other's ideas only after they have been fully tested, published in a peer reviewed journal, or patented. This process can take years.