Thank you for inviting me — this has been an amazing event. I enjoyed our table conversations yesterday. My background is in neuroscience and I worked on a bunch of technology before going to Neilsen. My goal today is to share some info about the foundation, and to give you some insight into what it’s doing. If I can, I’ll also make it possible to see how the next 3 speakers are doing work that fits together.
Okay. Who’s Craig Neilsen? He was a real estate developer who was involved in a bad wreck in 1985. His injury was C3/4 complete, and you all understand what that means. He went back to work, continuing in real estate, and then in 1993 he established the Maristar Casinos … which was worth $1.5Billion at the time of his death. In 2002 he established the foundation, with goals of forwarding the science and of helping people.
Before he passed away, he’d made arrangements to sell the casinos and endow the foundation so that it could continue to do its work. In the last year we gave away $36Million in grants and pledges. (Heads up, people! Neilsen is the only endowed foundation SCI currently can rely on … by contrast, the various forms of cancer and heart disease have dozens. Neilsen supports a TON of the research that gets done.) We help people with injuries go to school. We finance education for doctors. We fund arts programs and sports programs. We have a psycho-social research program.
But our largest portfolio is the translation portfolio. We have our own targets, and we also share money with other foundations when their work falls outside the efforts we’re doing. At the University of Utah we’re building a hospital where people with injuries will get specialized care.
Investigator-driven research is one place where a lot of money goes. We recently asked ourselves whether our choices reflect what people want. (She’s showing a very famous bit of data gathered back in 2001 by Kim Anderson about what people in chairs want to see as a research focus.)
There’s a disconnect between our desires and what’s getting the $$$ … lots of us want sexual function to be studied, but very little money is going there. It’s different with bowel and bladder, because there are lots of people working in that area. But still, Neilsen wasn’t getting an appropriate number of proposals, given the community’s well-established wish list.
The science is … okay, she has an image up that illustrates how closely related are the nerve fibers that control sexual function, bladder function, and bowel function.
They formed a group that came up with a set of recommendations, which look like this:
Education and care standards … we’ve been using guidelines in hospitals that are 20+ years old.
Bowel physiology … still a lack of understanding of how this system works
Sensory awareness … we all know about “accidents.” Restoring sensation, or finding some way to inform the system that there’s a need, is the goal.
Neuromodulation, which we’re going to hear about later this morning is one promising area.
Rehab, activity, and exercise … there’s been a lot of anecdotal evidence that moving has an impact on the B, B and S functions.
(Wheeler et al 2-19 translating promising strategies for bowel and bladder is the paper that captures all this info in detail. It’s open access and published just last August, so have a look.)
The good news is that we’re making progress. In 2017 we did this workshop and named these priorities, and now we’ve seen a threefold increase in the numbers of proposals we’re seeing that address these issues.
We also have scientists who have stepped forward to become collaborators, including Dennis Bourbeau, who’ll be talking later this morning about his work.
People are beginning to document what’s happening in this area as they do their experiments, so that we build a database to support more focused and more effective interventions, instead of just having anecdotes to share and tell.
Craig Neilsen’s son: My dad was the epitome of tireless perseverance.
Matt: Here’s a thing I stole from my son … he was doing an interview for a music magazine and got to talking about politics. He said we’re busy running around putting out fires, and we never get to the source. He said that most people don’t understand that for us the fires are the need to cath, the bowel program, and all that. The source is the injury itself. There are people who would say that diddling around with smaller things (like this morning’s topics) isn’t worth it. All the $$$ should be spent on a comprehensive cure. That said, there are some fires you might want to put out as you’re going. And of course in the process you’re going to learn more about the source.