Even as a young man, Scott Johnson understood that success requires grit and creativity. A diagnosis of multiple sclerosis (MS) during college didn't stop him from pursuing his dreams and founding an MS research organization.
In 1976, when Johnson was 20, he went blind in one eye. The cause was optic neuritis, an inflammation in the optic nerve. Two months later, Johnson experienced numbness and tingling his limbs and was diagnosed with MS, a potentially debilitating disease in which the body's immune system damages the protective casing (myelin) of its nerves.
“I didn't know what MS was,” Johnson says. Even in the first year after diagnosis, the symptoms were difficult to manage, he admits. “I had trouble walking. But after a flare-up, I would recover a certain amount of function.”
Johnson went on to earn a B.S. in civil engineering from the University of California, Davis, and an M.B.A. at the University of California, Berkeley Haas School of Business. He has served as president and chief executive officer of three separate Silicon Valley startups. “Fortunately, I was able to live a relatively normal life for the first 15-plus years [after my diagnosis],” he says.
Johnson wasn't interested in medical research at first. “I was patiently waiting for a cure,” he says. But in 2001, he began to question how research is carried out. “So many players are involved—academic researchers, the National Institutes of Health, Food and Drug Administration, pharmaceutical companies, physicians, non-profits—over the course of decades,” he says. The process is designed to ensure that treatments are safe and effective, which takes time. However, Johnson felt “the participants often didn't think strategically about the whole process, only their individual role in it.”
MS research needed a clear agenda that would unify and engage all of its moving parts, Johnson felt. So in 2004, he founded the Myelin Repair Foundation (MRF), “a non-partisan, non-profit organization with one goal: shortening the time to market for new medicines.”
Johnson and his team wrote a clear research agenda: focus on repairing the myelin damaged in MS, with the hope of restoring function. Their Accelerated Research Collaboration model would address each phase of drug discovery, from basic research to product licensing.
The MRF hires researchers from different universities and negotiates agreements with each institution. The universities own the patents, and the MRF holds exclusive licensing rights to intellectual property that is created. This saves time: pharmaceutical companies negotiate directly with the MRF instead of with separate universities.
Organizations like the MRF are vital to advancing scientific research, according to Daniel Kantor, M.D., member of the American Academy of Neurology, president of the Florida Society of Neurology, and founder of the Southern Multiple Sclerosis Consortium. “Without them, it would be difficult to explore treatments that drug companies might not investigate because they are financially too risky,” says Dr. Kantor.
The MRF took a risk investing all of their efforts in myelin repair. “Until we came along, the entire focus was on suppressing the immune system,” Johnsons says. Since 2004, the MRF has funded research that has resulted in publication of more than 100 peer-reviewed scientific articles, the identification of potential myelin-repair targets, and the discovery of new research tools (such as animal models for MS).
“As Federal research funds dwindle, we're going to need more funding from grassroots organizations,” Dr. Kantor says. The MRF has raised $45 million since 2004 in support of myelin repair.
“We knew from the start that the really important thing was to get industry interested in myelin repair,” Johnson says. Since 2004, more than 100 companies have contacted the MRF looking to learn more and even replicate their business model—including the National Aeronautics and Space Administration (NASA) and Harvard Business School.
Ultimately, Johnson says, he hopes the MRF will serve as a “paradigm for disease research. We believe this model can be applied to other diseases.”