In 1991, CurePSP’s founder, David Saks, recruited a Scientific Advisory Board from the gray eminences of movement disorders research. I was a young assistant professor at the time and far from a top name, but I was doing research in PSP and asked if I could join. At the first meeting, the august members sensed that I had more enthusiasm for PSP research than any of them and elected me chairman. I think they figured they’d let a young, naïve guy spin his wheels working on a problem that they saw as insoluble, In fact, they advised CurePSP not to waste its money on research.

We followed that advice for five years. (Actually, we had to because we had not raised enough money for research grants even if we had wanted to.) But in 1996, we awarded our first six grants for a total of $50,000. In the decade since, we have funded 85 projects with a total of $3,311,916. As a result, our understanding of PSP has improved at all levels – molecules, brain cells, brain circuits, whole patients and population statistics.

The gray eminences of 1991, though, were probably right. At that time, the advances that our grants financed would not have been possible, no matter how much money might have been available. Not until the late 1990’s did our understanding of neurodegenerative disorders in general advance to the point where PSP research could really take off. This was based mostly on the observations that loss of brain cells in neurodegenerative disorders involves abnormal folding and accumulation of a protein (different proteins in different disorders) and abnormal function of mitochondria, the cells’ power generators.

These insights created a kind of scaffold of knowledge from which the details could be hung one by one until the whole disease process becomes clear. At some point in that process, someone will identify just the right place to throw just the right monkey wrench to stop the whole process in its tracks.

That will be part of a cure. The rest will be to regenerate the brain cells that were already lost and to re-establish their connections. That’s far more difficult. But if we can learn to diagnose PSP and CBD at an earlier stage, then we will be able to throw that monkey wrench earlier in the course of the illness, halting it before it causes real disability.

If we all devote what we can to the effort, that day will not be far off.

Lawrence I. Golbe, MD
Chair, Scientific Advisory Board
Director of Research & Medical Affairs