Raising the Profile of Medical Research
With entrepreneur Scott Johnson at its helm, the Myelin Repair Foundation is pursuing a multiple sclerosis cure with all the gusto of a startup.
By Erick Schonfeld

(Business 2.0) – What happens when a former CEO with multiple sclerosis applies his smarts to treating the disease? The answer, thanks to Scott Johnson, is a lifesaving shake-up in the world of medical research. Johnson, a veteran of the Boston Consulting Group and three Silicon Valley startups, was diagnosed with MS in 1976, when he was 20. For most of his career, he didn't have much hope for a treatment. Then, five years ago, he read about myelin--the fatty coating that protects nerve cells and that MS sufferers lack. Johnson quit his job and started the not-for-profit Myelin Repair Foundation to get myelin drugs into human clinical trials by 2010.

From the start, Myelin Repair was nothing like a typical nonprofit. "I looked at this just like we were starting a company," Johnson says. His first task: assembling the best team possible. Johnson persuaded five of the field's top university researchers to merge their labs and create a more efficient treatment development plan--doing in five years what might otherwise take 15.

Multiple sclerosis is such an erratic disease that clinical trials take longer than normal, making research financially unattractive to drug companies. So Myelin Repair coordinates research between labs, hosts servers for sharing experimental data, files for patents, and will license future discoveries to pharmaceutical firms. Myelin Repair will get 50 percent of drug royalties--enough, Johnson hopes, to allow the organization to finance itself in the long run.

Of course, Johnson is not above taking contributions. On the contrary, Myelin Repair has received $6.5 million in donations and $2.5 million more in pledges. At its first fund-raiser, held at Stanford in 2004 for five wealthy donors, Intuit founder Scott Cook was so impressed by the scientific presentation that he told Johnson, "Count me in for the first million." Later he added another $750,000.

Johnson's new model also seems to be working as a selling point. eBay founder Pierre Omidyar, whose foundation donated $750,000, says he wants to prove that it works so it can be transplanted to other medical nonprofits. Twenty other medical charities, including the American Cancer Society, have already inquired about Johnson's business approach. Happily, this is one market where it's nice to see competitors profit from your success.