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Finding a Cure
In 1976, on a backpacking trip through Europe with my girlfriend, I lost the vision in my right eye and soon after experienced a peculiar numbness from the waist down. A doctor there told me I might have multiple sclerosis (MS). I’d never heard of it. I was 20 years old.
When I returned to the United States, a neurologist confirmed what the German doctor suspected. I was diagnosed with MS, a disease in which my immune system attacks the insulating substance called myelin that surrounds my nerves. Possible symptoms range widely, including paralysis, vision and hearing loss, focus and concentration problems, and incapacitating fatigue. Today, I am one of 2.5 million people living with MS. There is no cure.
Like many people diagnosed with MS, I did my best to hide and ignore it. Though attacks slowed me down, I completed my undergraduate civil engineering degree at UC Davis and my MBA from Berkeley-Haas. I married my girlfriend and launched a 25-year career in business and entrepreneurship. By MS standards, I have been more fortunate than most. But the attacks have taken their toll. I cannot use my right arm and need a brace on my right leg to walk.
With each passing year, I began to lose hope that I would benefit from the millions of dollars spent on finding a cure.
In 2001, I read an article in Businessweek about research that suggested myelin damage in MS could be reversed, with the possibility to restore lost function in MS patients. This was the first time I read about the possibility of restoring myelin, which would accomplish so much more than slowing the disease progression.
Upon further examination, I learned that the drug development process, an extremely large and complicated ecosystem, was lengthy and expensive - with little benefit to patients. And most surprising from a business perspective, there was no plan to guide the process toward a cure.
In 2002, I began the Myelin Repair Foundation to unravel the scientific mysteries of myelin and accelerate the scientific research system to produce new treatments. By applying business principles to medical science, we set out to recruit the best scientists with expertise in myelin biology to adopt a new way of doing research based on collaboration, which we call the Accelerated Research Collaboration model. By creating a highly collaborative yet “managed” environment for researchers, we sought to ensure that the work remained within the scope of the overall research plan geared to achieve patient-centered results.
Our model has accelerated research significantly; scientists have produced more than 100 potential myelin repair targets and developed numerous new research tools that can be used for myelin repair and neurological research. Furthermore, we have received seven patents, and recently, our research entered clinical trials after seven years - a rapid timeframe considering the current snail’s pace of drug development.
Along with our success, we also face challenges. Since we are completely dependent on philanthropic donations, the generosity of many foresighted Silicon Valley entrepreneurs, MS patients, and foundations helped sustain our work in the early days. We face the difficulty of raising money during one of the worst economic downturns in U.S. history, a job no less difficult than executing a plan to develop the first myelin repair drug for MS patients.
Achieving a successful myelin repair treatment will not be the end of our story. It will be the beginning of a process to establish a new research paradigm that speeds patient treatments for all diseases. This is a day I hope will come soon.
Scott Johnson, MBA 81, is the CEO, president, and founder of the Myelin Repair Foundation, a research foundation dedicated to developing the next generation of multiple sclerosis drugs.