When Scott Johnson was diagnosed with multiple sclerosis at age 20, he didn’t let it impede his career. He became a business management consultant, heading three start-ups.
Then in 2002, his disease stirred a new business passion in him. He launched Myelin Repair Foundation, a nonprofit medical research organization pioneering a model to accelerate development of new patient treatments. The idea came from a newsbrief Johnson read announcing Yale’s findings that it was possible to remyelinate nerves in the brain and spinal cord, reversing the triggers of MS.
Johnson was not a scientist. He had never run a nonprofit. But he applied best practices from his training as a business strategist.
In his research, he found a lengthy value chain in which players had competing incentives and little collaboration. He envisioned managed, milestone-driven collaboration among scientists. To him, the idea seemed like common sense: identify the best people, set goals and manage the process to execute on plan.
But that was unheard of. Johnson had to spend months analyzing, preparing and negotiating to get prestigious scientists together.
In the end, the deal was that Johnson’s foundation would fund basic science as well as the patent work involved in identifying intellectual property in exchange for half of the potential revenue. With that model, his organization could become self-sustaining.
That was just the first round. Johnson still had to engage biopharma to negotiate an agreement to evaluate targets for commercial development.
Johnson distinguishes his efforts from other nonprofit disease research organizations by addressing issues across the entire value chain, from basic science to treatment development to FDA approval. He’s shifted the game by making accelerated treatment delivery instead of profit the priority.
His next challenge will be scaling and replicating the model for other diseases.
How to reach: Myelin Repair Foundation, (408) 871-2410 or www.myelinrepair.org