The Breadcrumb Path from Bench to Bedside
Lyn is very appealing. That’s really the only word to describe this woman. She’s able-bodied and energetic, full of curiosity and good will. She smiles easily; also, when she’s focused on making a point, you realize that there’s a very clear mind at work.
She describes her background: She got a BA in biology in New York, then a PhD in Neuroscience at the University of Florida. This is where she was mentored by Dr Paul Reier, and where she learned that interacting with paralyzed people was part of the project of being a neuroscientist. This led to a Post Doc project in endocrinology and neuroscience. Then she was a staff research scientist at Syntax Research, then a Research Scientist in SCI, working with mice and rats at Ohio State, then (are you tired yet?) she got on the faculty in Physiology and Cell Biology, also at Ohio State.
And finally, five years ago, she became the Program Director of NINDS at NIH.
She’s here to bring us the NIH perspective.
How does funding work? We pay taxes, and the Congress divvies up the revenue. Some fraction of it goes to the NIH, where it gets divvied up further. A fraction of the fraction goes to the NINDS, which is the group that oversees SCI research.
The mission at NIH is to seek fundamental knowledge … and the application of that knowledge.
All of which is to say that Lyn is the person, friends, who runs the SCI programs that get funded by the NIH. It’s a transparent, slow, careful process — which it has to be because this is public money. Taxes support all of it.
Why is this talk about a breadcrumb trail?
Because she was thinking about the Hansel and Gretel story, in which the kids are trying to use breadcrumbs to leave a path that will show them where they came from — but then the birds ate the bread crumbs so the path backwards disappeared … which felt like a good metaphor because it can be really, really hard to figure out how we got to where we are … much less how to get where we’re trying to go.
Here’s the process. Someone gets an idea. They figure out how to test it in a lab. Then they test it in an animal. Then maybe in another animal. Then … they start talking to the FDA, then if it’s really great research, maybe a “first in man” trial. (She suggests that we read a report published after the PRAXIS conference here in 2016, which lays out this process in detail).
Is the process of good results from labs or animals that lead to more experimentation just iterative wheel-spinning? Why do we keep going backwards? Because the people who do that work want to do discovery … they don’t know how to get to translation. It’s not their skill set.
Here’s a success story from Brian Kaspar’s lab. He found a gene therapy that saves infants who have Spinal Muscular Atrophy Type 1. It took him 15 years. He started with a way to use a virus as a delivery mechanism (this was just basic research science, and he was studying a completely different disease). He was unusual in that he saw possibilities and pursued them …
She’s showing us how the money breaks down, and what they spend it on … for the last 2 years she’s been working with her peers at NIH, the VA, the DOD, and the Neilsen Foundation, which are the four largest funders of SCI research in the USA. They basically coordinated in such a way that between the 4 of them they were covering the entire gamut of research, from basic science to translation to patients.
The NIH is hosting a conference this February in Bethesda called SCI 2020: Launching a Decade of Disruption in SCI Research. Registration is free. It will involve all the players: academics, foundations, industry, government, and consumers.
That’s great news. It really is, because this is the NIH saying, basically, “Hey. This SCI cure project has finally bumbled itself to a place where it makes sense to get everybody together so we can figure out how to proceed.” And if the very conservative, cautious folks at NIH think that, it means we’ve crossed over. We’re not in the wilderness anymore.