Lyn Jakeman comes up to moderate a panel with all these doctors. She’s the person at the NIH who manages the grant program for regeneration and repair.

There was a time when she started her research in 1985, when “the community” was researchers, and the goal was to regenerate the cord. We have really evolved since then, thanks to the catalyst of orgs like u2fp and the Rick Hansen Institute. We’re no longer trying to get one wagon across that valley. We’re looking at this as a project to bring across that valley of death enough tools and resources that we get everybody across.

We need to change the thinking and application and accessibility of all the things that get developed. What’s really cool about this meeting over the years is that we don’t need to wait until there is a cure to cut off all of Matt’s dreadlocks at once. We can do ‘em one at a time.

This is why I think that regeneration research is important, but so is this thing we’re talking about now: epidural stimulation.

I was just told at a leadership seminar that I have a reputation for being “too nice.” I’m going to try not to do that.

The panel of the last 3 speakers is assembled.

Q: So. Michael, we’ve just seen this exciting research that seems to indicate there are no complete injuries. With that in mind, please clarify what your Institute is doing with epistim?

We’re currently funding a few epistim efforts. The challenge is that we don’t choose what to fund; the peer reviewers do that. What we need to move this forward is good applications that will make it through peer review. What I’m doing is reaching out to the community and to the researchers to get all the necessary people to come in. I can facilitate building those teams so that the grants are likelier to get funded. If there is a sudden tick of excitement, this gets a lot easier.

Talk about SPARC and how that’s helping …

Within SPARC’s mission, we can come up with other sorts of funding… he’s describing how SPARC and the brain initiative both are possible venues.

Question for Dr Lee: where else could you go to leverage funding?

I recognize that our project is huge … when I started I said that if this isn’t true I want to prove that it’s not. Even if in my first 2 patients if all I got was the toe to come back, that would be huge. But when I saw the actual response, I knew the implications were huge. I’ve been a neurosurgeon for 10 years and I’ve also had to tell  a lot of patients that recovery was very unlikely. This project is going to have a huge impact. We don’t need 10,000 patients in this instance. At the Mayo clinic I’ve been working heavily with our department of development … describing how on a different project he was able to bring in 10 million in private funding … we can do that again. With epidural stimulation. There are very wealthy individuals who could fund this — snaps fingers — in an instant.

And this kind of meeting is very important, because leveraging this small data we have already, and leveraging the people in this room, we can make this spread like wildfire.

Lyn: Dr Darrow, you clearly have the passion to move this forward. How has your team thought through data sharing? What plans do you have to share your data?

That’s a very poignant question … all of us have cellphones, right? We’re already able to measure movement with embedded accelerometers. We’re talking about a small clinical trial that will generate enormous amounts of data. Not only can we answer the questions where going after right now, but we can generate all kinds of new questions.

Now there are some great mechanisms for sharing data. My problem is that I’m not going to just stick in a box and send it to NIH for them to pick through. Our plan is to sore this data in a useful say and make it public. Others will be able to think up all sorts of ways to use it.

Q: will epistim work on my injury, which is at the conus medularis?

A: so far, no. only for injuries higher than that.

Q: about funding … how can we see the 3 of you collaborating and minimizing duplication and what can we the community do in response?

A: govt guy: we have some real restrictions on what we’re able to do. so we talk with partners in private foundations and make an effort not to duplicate it. we have to be informed by what’s happening outside our system. people can help by giving input to us.

A: Darrow: the most important thing I get from the community is dialogue and communication. We try to keep up to date, but publishing happens YEARS after the work is done. I get great emails from Rob pointing me toward things I need to understand.

A: Mayo guy: Our project wouldn’t be where it is without Reggie’s team at UCLA. The idea of working with other centers is the most exciting thing …. with respect to funding, the public and private funding mechanisms synergies. When we get a project funded, it’s been through the highest levels of intellectual rigor. At NIH some institutes only 5% of projects get money. And getting that money therefore means you’re the best, which in turn makes it easier to get money from the private orgs that have dollars to give. That’s synergy. Gov’t stamps us with approval, we take that stamp and leverage it with private funders.

Lyn: One of the things we can do at NIH is set up collaborations. Saves time when the companies that make the devices are working right along with the academic investigators.

Lee: The other thing that’s crucial is getting the FDA to approve use. And they’ve been super helpful.

Q From audience (C4): How does the inclusion/exclusion work? Why is medical marijuana on that exclusion list?

A: Dr Lee: For this study we’re just trying to keep confounding factors out. But know that we do change them… we had at one point excluded people with low bone density, but that was going to exclude too many people.

Q: same guy: (couldn’t hear him)

A: Dr Darrow: it’s about exclusion of people with spasms .. they agree to talk later

Q; Our friend Corinne, from Europe: I’m still a little confused about what people can expect from this intervention. The way that I see it, we have a technology that seems to be able to bring a lot of things. Could we not have an approach that focuses first on what we WANT and not just on what this particular therapy BRINGS?

A: Dr Lee: Function is very important to me. The patients we showed you is now able to stand unassisted … that means, for one thing, that patients who have suffered from pressure sores already get a huge value. As far as the long term … it was 100 years between the Wright Brothers first flight to landing an aircraft on the moon. One of the things we’re working on is the question of whether or not we can strengthen these muscles. Can we get stepping motion?

A: Dr Darrow: There are some really amazing people working on this problem in other areas — like autonomic function. What each of us is trying to figure out is where we fall into the bigger road map. It does exist.

A: Wolfson: a lot of this is work that has to be done behind the scenes — the mapping out of the long term game plan can’t really take place until there’s a maturity in the research. It’s a long road to getting this to the general public.

A: Dr Lee: the implants we’re doing now use technology that’s 50 years old. The cell phones we all have are light years ahead of it.

Q: When you talked about optimizing parameters on the stimulator, are you expecting they’ll need to be modified on a case by case basis? How is that going to work? Also, do you see getting results down the road with a less invasive version of the stimulator?

A: Dr Darrow: We’re definitely thinking about that. Our experience with using the devices for pain is that every patient uses it a little differently. And we expect that the optimizing will happen over time, too, with each person who uses the device.

Q: Why no women in the studies?

A: We want to include them.

Q: Any significant side effects you’ve seen?

A: No.

Q (that wasn’t asked because of time):

Hey! Why is there no mechanism for the community/consumers to be part of peer review??? Some of us feel that this is a big gap in their process. I’ll be looking to get some of the panel/folk here to answer that one.

Gah, lunch at last! And I spent most of the allotted time catching up these posts. Back for the afternoon session in a minute.

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