One man's crusade for a cure
With entrepreneur Scott Johnson at its helm, the Myelin Repair Foundation is taking on multiple sclerosis with all the gusto of a startup.
By Erick Schonfeld,, Business 2.0 Magazine editor-at-large

(Fortune Magazine) -- 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 shakeup 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 have taken 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 among labs, hosts servers for sharing experimental data, files for patents, and will license future discoveries to pharmaceutical firms. Myelin Repair will get 50% 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 already received $7.5 million in donations -- and an additional $4 million in pledges. At its first fundraising event, held at Stanford University in 2004 for 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 Cook added another $1.75 million.

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 the system works so that 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.

This article originally appeared in Business 2.0 magazine.


To learn more, you can reach the Myelin Repair Foundation at 18809 Cox Ave., Suite 190, Saratoga, Calif. 95070; tel.: 408-871-2410; fax: 408-871-2409; or on the web at myelinrepair.orgTop of page