Skip to main content

Our Voice

U2FP's Blog > Keeping you current on the movement to cure paralysis
Aug 1, 2024

Follow the Money - U2FP's Symposium

Sam Maddox


U2FP’s Annual Symposium is just under two months away, happening September 27-28 in Atlanta, Georgia (register here). This is the first in a series contextualizing the scientific presentations at this year’s gathering. So, let’s look at Friday morning, day one.

First, Matthew Rodreick will set forth a thematic context for the coming sessions: Point of view. 

OK, what is the point and who’s doing the viewing? All the interested parties have their own proximity to the challenges of spinal cord injury, and they are all in the same room here. That’s the point.
 

Matthew Rodreick, center, delivers opening remarks at last year’s Symposium in Minneapolis. Click on the image to watch his brief presentation from 2023.

You have the lived experience community, of course, and the scientists. Don’t leave out the funders, or the regulators. And welcome aboard companies, that’s a good sign when investors see potential. That’s who’s looking.

We sort of assume that these stakeholders set their compass to the same North Star (curative therapies, soon). What this symposium reveals, however, is that perspectives and motivations can be quite different depending on the observer. We’re hoping that everyone listens to one another so we can better understand our collective roles and maybe speed things up.

There are eight sessions over the course of the two-day Symposium. Session One asks us to think about how and where science research is funded, and how the system of delivering therapies might be stuck in a cumbersome, inefficient academic model of discovery. 


Money
Jennifer Dulin, PhD, is a SCI researcher at Texas A&M. Dulin’s main interest of study is regeneration related to stem cells. That’s not what this presentation is about, but feel free to ask her during the break or in the hallway about optimizing cell therapies by combining rehabilitation or bioengineering.

At the 2022 Symposium, Dulin’s lab presented a systematic review of a ten-fold jump in human clinical studies in recent years, with no treatments to show for it. This revealed issues with trial reporting and design, and with clinical trial rationale -- for example, most trials do not appear to be designed to progress toward FDA approval. 

That study led Dulin and colleagues to this year's talk, which still isn't about cells. She will discuss preliminary data from a study she has undertaken – at the request of, and in collaboration with U2FP – to follow the money. Many millions of dollars have been spent on SCI research over the years, money from the federal agencies, the VA, private foundations, and individuals hoping to make a difference. 

No one has ever sorted it out in an organized way. Where did the money go? Does the money follow research trends? Are funding priorities changing? Can we then answer the questions, what was delivered, and did it matter?


Academy
Dulin will be followed by David Baker, Chair of Biomedical Sciences at Marquette University. He’s going to confront the system we have now for developing a scientific discovery as a therapy. Baker has direct experience bringing a discovery through the process; in 2007 he co founded Promentis Pharmaceuticals, a startup that raised over $40 million to bring a compound into clinical trials. The company targeted the treatment of impulse control disorders by way of neurotransmitter (glutamate) imbalance and oxidative stress.

Baker is an academic by trade who’s willing to challenge the shortcomings of the academy. He suggests a complete transformation of the discovery to therapy process, moving toward one that is driven by impact rather than profit. We may need to explore alternative development models, Baker suggests, that transform the relationships between academia, the federal government, and the private sector.

Dulin and Baker should provoke some big picture thinking, and should stir up many more questions than answers. For example, regarding funding, who is deciding what projects get the money? Scientists, right? Not necessarily. Funders often set agendas and trends and researchers go along as a matter of career survival. Does Dulin’s data identify funding gaps? Duplication? Would a repository for an SCI research balance sheet be useful, and where would that exist?

Is Baker suggesting blowing up the academy? Well, sort of. What are the alternatives? How about a closed research ecosystem, an innovation factory of sorts, a standalone institute that incentivizes basic science alongside clinical research with built-in wherewithal to pull ideas through regulators to the market? Sure. But where’s the money?

The U2FP Symposium is a unique meeting, I urge you to attend. It’s two days in a room full of passionate people who engage together to solve a complex problem. We believe the problem is solvable, and we all want to hear from the people doing the research (coming newsletters will focus on the scientists coming this year).

There’s more to this than faith in discovery. Science is part of a larger system. Is it working? Depends on your point of view. Most in the room wouldn’t be there if it was. The idea is to break down the way research gets done, see what works, see what’s inefficient or broken, and go forward from there.

Stay curious,


PS - Only two weeks left to take advantage of our Early Bird registration discount of almost 30%. Plus SCI community (injured and family) get an additional 50% off. Your lived experience with this injury is what makes this meeting unlike any other - we need your voice.

2024 Science & Advocacy Symposium Sponsors