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If someone had told Scott Johnson five years ago that he would soon give up his well-paying job at a big Silicon Valley company and start his own nonprofit organization, he would have laughed and said, "You're crazy."
Yet, here he is--heading up the Saratoga-based Myelin Repair Foundation and making scientific progress in the fight against multiple sclerosis.
For him, it's personal.
"I was diagnosed with MS when I was 20. So I've had it for 29 years, a long time," he says. "I've been pretty fortunate, though. I can walk and get around pretty well."
However, Johnson knows many others with MS aren't quite as lucky.
Back in 2001, Johnson was happy working in the commercial world. Then, one day, he read a tiny article in Business Week magazine about myelin repair.
MS is thought to be an autoimmune disease that affects the central nervous system, which consists of the brain, spinal cord and the optic nerves. MS strips the insulation off the wiring in the brain--otherwise known as myelin--and prevents the body's natural repair of it. Therefore, it has been thought that finding a way to turn the body's natural repair mechanism back on would be an effective and helpful treatment for MS, one that could significantly improve patients' quality of life.
Johnson says he was fascinated by the article's discussion of the theory of myelin repair. Most articles he had read simply talked about the dream of finding a cure, never treatments that could repair the damage the disease causes.
Johnson admits he had never thought repair of damage was possible--the central nervous system was always thought to be static, not like skin cells that constantly replenish themselves.
"But just in the last five years, they've realized that's not true," he says.
Johnson tracked down the scientist behind the article and started learning more about myelin repair possibilities and how scientific research is conducted.
The Myelin Repair Foundation was born in October of 2002, with the dream of funding and helping to conduct research for myelin repair and treatments of other such chronic diseases.
The following spring, Russell Bromley came aboard as the foundation's chief operations officer, with a background in both pharmaceutical research and development and academic science.
"I was really intrigued by what Scott wanted to do. I had been in basic science research back in the '70s, and the reason I left and went to the commercial world was, I couldn't see how what I was doing on a daily basis was ever going to help cure cancer," Bromley says. "There was too much of a disconnect between research at the university level. Scott's goal in all this was to bring all these research laboratories closer to the needs of the patient and see if we couldn't accelerate the process of turning scientific discoveries into new treatments. That's something that's become increasingly more difficult as time has gone by because pharmaceutical companies are more risk-adverse. They're always looking for the next giant drug, so they're looking for things to be more defined and well-developed before they're willing to make the investment in clinical trials; and yet, research labs are there to uncover basic science. So the two [entities] have been moving apart over the last few years, and that's not helping us get new treatments for people with chronic diseases like MS."
Today, the Myelin Repair Foundation partners with 29 senior scientists/lead investigators, each of whom has a Ph.D. and about 25 to 30 years of experience. Each senior scientist also has a team of 15 to 25 researchers or graduate students.
Bromley says the foundation started out developing a solid plan and researching work that had already been done by others in the field. Within the first year, it identified three therapeutic targets, or possible treatments.
One of its first successes was figuring out why a seemingly important treatment that had been attempted 20 years before had failed. Patients with MS had been given a drug that made their condition worse. The foundation's researchers discovered that a chemical in the drug was actually killing the repair cells. So, their focus turned to, how could they protect those cells?
"Failures usually aren't published. But you can learn so much from them," Bromley says. "Plus, some of the best findings can be accidents." He adds that taking information such as this to a pharmaceutical or biotech company also improves its chances of garnering investment.
As expected, scientific and medical research such as this comes with a hefty price tag. However, Bromley and Johnson say that is a big reason why they are glad to be headquartered in the Silicon Valley, where there are a lot of venture capitalists. The foundation operates as a 501(c)3 nonprofit organization so it can solicit tax-deductible donations from private parties and other charitable organizations, and its goal is to keep operating costs to less than 20 percent of funds raised. There are only two operations staff members, and around 80 volunteers.
Recently, the foundation was given a large grant by the Robert Wood Johnson Foundation in New Jersey, started by the family behind Johnson and Johnson. The grant was earmarked solely for operating costs, so now, 93 cents from every dollar is going into research. Bromley says securing this grant has helped get the foundation noticed and earned it credibility in the nonprofit world, since the Robert Wood Johnson Foundation is one of the toughest organizations from which to get funding.
Individuals and networking provide additional funding, and Bromley says the foundation hopes to soon start receiving government funding, and has been meeting with people at the National Institute of Health.
Visit www.myelinrepair.org. The foundation is always looking for more volunteers with special skill sets. Call 408.871.2410.
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