Working 2 Walk 2016

Welcome to Minneapolis

Advocate of the Year?!

I’m writing this last post on Monday morning, from the couch of my in-laws’ living room in suburban Minneapolis. It’s taken me a little time to process the idea that U2FP chose to recognize my own work with this award — specifically, I think, to honor the book I wrote and that the Christopher and Dana Reeve Foundation generously funded and continues to give away to anyone who wants a copy.

There was a weird moment on Saturday, the 2nd day of the conference, just before Dr Kim Anderson rolled up to give her presentation about consumer engagement. I’d managed to eat some lunch while I got the last of the posts from the morning all up on the blog, and I was sitting there doing my thing … which means, typing as fast as possible in a sort of simultaneous translation effort.

Marilyn Smith was at the lectern saying that this is her favorite moment of the conference, when someone from the community is recognized for the work they do. Everyone, she said, has something they’re able to do. For some people it’s fundraising, for others it’s organizing, for others it’s writing. I got all that into my notes.

And then she said, “The person who’s being honored today has written three books, and you’ve been hearing a lot about the last of them in the last couple of days.”

My notes stop at the words “three books” and are followed by OH SHIT, which marks the moment I realized she was talking about me. So she finished her thoughts and I went to the front of the room and took the award. It’s a giant cut glass thing that weighs about 7 pounds. And I told the people that I write because I’m not a great talker, then went on to demonstrate how that looks in real time.


Because I have this format and this platform, I get to tell you what a person who was a good talker would have said in that moment. Here it is.


I named the book Don’t Call It a Miracle because I can’t stand it when people talk about recovery from spinal cord injury as if it were some kind of magic act. I hate it because it inserts an element of hopelessness into the situation that just does not belong there. Who is it that needs a miracle? Someone with no options, no path forward, no hope.

That’s not us.

It’s not us, because we are the first generation in human history who can see progress in repairing the damage spinal cord injury does. It’s not us, because of cell therapies and genetic therapies, and epidural stimulation, and activity-based recovery, and brain-body interfaces, and exoskeletons, and all the devices, drugs, and interventions that were not dreamed of just twenty years ago.

And it’s not us because there is now a giant opportunity to become a functioning international community where no such option used to exist. I’m sitting here in that space right now, composing language that can be read and reacted to and shared by anyone with a smart phone or access to the internet. 

The whole point of the book, from conception to execution, was that we don’t need a miracle. We need to get to work, to talk to each other, to figure out what thing it is that we do well and how that thing could fit into the bigger project.

So, I’m crazy grateful for the chance the Reeve Foundation gave me to write that book, and I’m humbled by the many people who approached me over the last couple of days to say that it brought them to the conference, taught them something useful., and generally fired them up.

If you don’t have a copy, download one for free from the Reeve website. Order a free box of them there, and give them away to everyone you know. If you’ve already read it, go to its amazon page and write a review so that people who happen across it will understand what it is and what it means. 

We don’t need a miracle, friends. We need each other.


Kim Anderson-Erisman Keynote: The Last speaker

This talk is called

Spinal Cord Injury Consumer Engagement in Research

She starts with some learning objectives:

  1. identify functions of high priority  for us, the sci consumer population
  2. describe risk/benefit decision factors important to the population
  3. discuss strategies to employ sci consumer engagement

So what does engagement in research mean? Could be lots of things. E.g.:

  • it’s being a research participant
  • helping select topics
  • design studies
  • conducting studies
  • dissemination of results = spreading the word, even to your own doctors

Why does this matter?

  • you can help guide research to be more patient oriented
  • make it more clinically relevant and useful
  • increase trust on all sides
  • improve uptake so that everyone has access
  •  help set research priorities

How do you identify functional recovery important to people living with sci? You ask them what they care about. Dr Anderson is the person who led a 2004 study of 681 people that showed how many things we care about more than walking. (arm/hand function, sexual function, bowel, bladder, trunk stability … the list of things we’d like before walking is long.)

Autonomic function recovery is a high priority across all injury levels — and there have been 5 studies since then that all show the very same set of priorities.

A spinoff study from the first one was done in 2007 — 90% of people were involved in sex pre injury, and that number fell after (sorry, didn’t get the number before she moved off the slide). 32% of subjects got AD during sex, and 20% said it interfered with sex. AD during bladder or bowel care is a predictor of AD during sex and AD interference with sex. We don’t know how prevalent silent AD is. We don’t know anything about the long term repercussions of repeated AD.

What Are the Barriers to Exercise Participation, 2013 study:

There are both interior and external barriers (laziness, not knowing how, not knowing where, not being motivated are all examples of interior barriers.) More than half the people reported that their doctors had told them to exercise, but less than a quarter had gotten specific instructions from that doctor telling them exactly how or what to do. Not exactly helpful.

Not having equipment at home reduced the odds of being an exerciser by 68%.

Lack of transportation wasn’t a problem for most people in the survey, but not knowing where to find an accessible fitness center was.

Risk v Benefit — she’s moving on to talk about how our community has weighed the cost of engaging with new technology against the possible benefits from doing so.

There was a survey about surgery to improve arm/hand function done with 137 people in 2009.

I’m looking at un-seeable dense graphically presented info, which is frustrating. It looks like one big takeaway from this survey is that people were generally willing to take the risks of tendon transfer surgery, but less and less as time passed. Meaning, during the first year post injury, a lot more would do it, but as years went by that number would fall. There’s a big cost to doing it in terms of time, because it takes a while to recover from this surgery — several weeks of having LESS hand function in exchange for having MORE afterwards.

Moving on to the design of neuroprosthetics – 2015 study of 156 people — they asked people about implants —and found that mostly they’re wiling to have this kind of therapy IF it will give them back something they care about.

Another study about readiness for cellular therapy — thoracic folk more prepared to go for it, cervical people more risk adverse.

The main takeaway is that people are willing to undergo risk for potential incremental improvements in functions that are of high priority to them.

So how can we the community participate in trial design?

One issue is enrollment — how to get more people to participate? Level of participation impacts many aspects of trials. It’s not the case that every person with SCI wants to do it, wants to be the first … We’ll need to be proactive in getting people on board for the future. We’ll need multiple phase 3 trials, and they’l have to be multi-national.

What is going on with people who qualify but choose not to participate? People were asked in a survey which factors impacted their decision to be in a trial …

That study identified 32 factors, and tracked them along with demographic factors. There were 769 people in the survey. They were analyzed by gender, injury level, current age, injury duration, and country of residence

They found that some factors are “universal,” by which they mean that more than half the people in each subgroup agreed on them.

(You can have a look at the abstract of this paper here.)

Some of the universal strong facilitators, meaning things that people said would make them likely to be in a study:

  • improve function, increase independence
  • increase knowledge
  • altruism (help others who come after me)
  • family support
  • recommendation from peers and personal physician

And some of the universal strong barriers to participation were:

  • possible decrease in function
  • impact on income, medical coverage
  • out of pocket expenses

Then there evenly split factors — things that some groups saw as positive and others as negative … for example, among Asians “being a guinea pig” was negative, but positive in other populations.

Some — but not all — people also reacted negatively to the possibility of being in a control group.

The point of all this is to understand way ahead of time exactly what makes people in our community willing/not willing to be in a clinical trial. There will be more and more trials as scientists close in on what needs to be tested in people, so it makes a lot of sense to have a feel for whether or not they’ll take the opportunity or not.

We must have a North American SCI Consortium

Purpose: bring together the many organizations in North America that advocate for, represent or communicate with people living with SCI to provide a platform for shared goals to the larger community.

There’s no need to reinvent the wheel, because we can follow the European SCI Federation model.

That group started 2005 with 12 countries; in 2016 it has 30 organizations from 26 countries, written policy statements, and annual meetings to share and disseminate information.

We can also look to the patient-focused organization called Faster Cures, which has lots of resources for us, and the MJ fox foundation, which has a thing called Fox Insight — an online data collection site for people with Parkinson’s.

Her summary:

  • lots of info has been and will continue to gathered from the SCI community itself
  • that information must be obtained in a reliable and useful format
  • it can then be used to inform and target research
  • being engaged brings your voice to the table

More about Kim Anderson, her work, & her contact information here.

And that’s it! The group will break into table discussions now, and after a set of breakout sessions, the conference officially ends. Thx for playing.



Q and A about Epistim and NMES

Kim is back to moderate the questions.

Q: Talk about the recovery parameters … you didn’t mention sensation. Anything to report on there or regarding pain or spasticity?

A: Sensation does improve, though it has sometimes been spotty. Spasticity has kind of jumped around. I don’t want to mislead you or overstate anything, but I can say that everything is moving in the right direction.

Kim makes a comment that it’s important that there be data to say what we know about improved autonomic function — not just anecdotes.

A: When we did the first study, we were going for movement. The secondary endpoints are autonomic function. What Reg and the team have decided is to divide up the tasks. One center will look at bladder, another ventilation, another sexual function. What we know is that there’s a way to fine tune these studies so that we can deliver an evidence-based product. We’ll know before anything is released that it does work. The FDA will approve us for these things one at a time.

Q: One exciting thing is that we get to stop thinking of complete/incomplete paradigms. What we don’t have is a standard of care for people participating in activity-based programs. I’m 20 yrs post and I’ve been involved in these programs for 3 years and am getting functional return. She’s making a speech, but I don’t hear a question …

A: Carrie talks about what they do at their center in Minneapolis … they’re taking people who seem to have plateaued off their programs and putting them into the stimulation programs and seeing more improvement.

Q: Thanks Nick for caring so much. Is there an outside limit  in terms of time since injury for either of these kinds of therapies.

A: Carrie says no, no limit. Nick says they just had a small breathrough a couple of weeks ago. Up until then their patients were all under 10 yrs post — but they had an Asia C 21 yrs post injury get hand function improvement and improved ability to stand. Goes on to say that the ability of the human body to repair itself can’t be underestimated. Carrie says that in the case of NMES, it does take a lot of time and a lot of work — not a fast process like epistim can sometimes be.

Q: Does the strength and endurance continue to grow over time?

A: Yes

Q: Are you two in competition with each other?

A: No, we’re synergistic. We’re creating the new doctor’s black bag, which doctors will use in the future. There are already people who have combined epistim and NMES. And Mark Pollock has shown that combining epistim with exoskeleton makes for a 4-fold improvement over either one alone.

Q: Can you describe exactly what happens in epistim? How does it fit into your business model?

A: When we stim, we’re targeting interneurons, and then proprioception comes into play … if the cord is turned on and awake, the proprioception kicks in. The more we combine stim with sensory input, the better it works. The stim device is acting like a hearing aid; it filters out the noise and lets whatever the signal is to come through. Reggie had a theory in 1969 that the cord was as sophisticated as the brain. We just got movement from two stroke patients … stroke is in the brain, right? So it’s the cord that’s changed.

Q: Have any of your subjects reported neuropathic pain or anything like that?

A: When we stimulate, we’re able to pinpoint a narrow funnel of energy going into the cord. We’ve had some situations — we had one person with AD who it was challenging to keep stimulating. And there was one subject who had — not complications, but a lot of spasticity. There were a lot factors affecting this person, including an accident that happened outside the university. We’re very hopeful that once that individual comes back into the study we can get him back to improving. The delay has to do with the health care system as it currently exists.

Q: For those of us who are 30-40 years out, how big a problem is bone density?

A: That’s one of the long term studies we’re getting underway. i don’t think at this point it prevents anybody from taking part in what we’re doing now. (Kim steps in to say that you lose bone density within a few weeks.)

Q: I’m an SCI physician wondering about forward thinking in terms of making this therapy available?

A: Nick says that they’re going to be attacking this one now that they (as of next week!) will have long term funding in place. This new set of tools is going to be sending data in real time back to doctors, which will raise the standard of care — the fact that all this technology will be delivered wirelessly will eliminate a ton of barriers in terms of ability to simply get to a doctor’s office. Carrie says that her patients have been monsters when it comes to getting their own care covered by their insurance. And they’ve had to be.

Q: We know that both Dr Harkema and Dr Lee had the whole “pre-hab” thing going. What do you say to the people here about optimizing their ability to take advantage of these technologies?

A: Stay healthy. We started stimming people without training, and it still worked but not as well as it did for people with training.

Q: it’s very frustrating that some improvement is documented and some is anecdotal. Why are you planning to do multiple studies to check each kind of improvement? Also please be very careful with using the word, recovery … it’s so difficult for us to know what to expect.

A: the problem is that it’s all so early … and that there’s only so much money to do each particular test. But be assured that in order to get something approved, it will require a different set of stimulator parameters. The FDA will be looking at the true benefit vs potential risk, for each organ system in isolation.

Q: so is there a bladder study planned in addition to bowel?

A: there’s a bladder study right now at the VA in Long Beach. Carrie says that in her case, they’re looking for outcomes BECAUSE their clients are reporting those kinds of improvements.

Nick Terrafranca Checking In from the Wilds of CA

This talk is called From Lab to Market: “Making the Dream a Reality” The technology transfer process.

Start with that great idea … image of 2 little boys labeled Reggie and Yury, followed by image of the aging real Reggie and Yury … we laugh.

How long does it take to get from a rat to a person? 5 years. Then what?

Commercial development, trials, FDA approval, sales and marketing, clinical use. How does this happen? Usually universities hope that some big player will buy it and move it along.

But that hardly ever happens. So what’s the other option?

Start-ups. Which can be crazy. here’s the process:

  • what’s the cost to develop your thing? to commercialize it?
  • what’s the regulatory pathway? healthcare is unique … not like a new app! and every barrier is more money and time
  • what’s the market size? (Nick had to show that this really is a billion dollar market opportunity. If it’s smaller than that the money guys won’t care.)
  • is there an un-met need? (this audience thinks so, yeah.)
  • is it patent-worthy? is there freedom to operate?
  • is there proof that it’s good? is there data?
  • are the prototypes, samples, or compounds?
  • is the invention really novel?
  • who’s going to pay for the patient to have this at the end of the process?
  • what will the cost savings be over a lifetime?
  • what’s the competition? is there a goliath you’re trying to take on?
  • then if you figure all this out, you go to the university and license the product, which gives them a little slice of your product.
  • Okay, so then what? What are the steps for commercializations?
  • recruit your team
  • write (draft after draft) of your business plan
  • raise money
  • build prototypes
  • pay the ongoing patent fees
  • survive the valley of death
  • raise more money
  • commercial development
  • get regulatory approval
  • What are the challenges to raising money?
  • finding the right investor partner …
  • Where are things right now?

We formed NeuroRecovery Technologies.

We have two systems: the implantable system and the transcutaneous system. We originally thought that the former would be for A and B patients, and the latter for C and D. But that plan changed when we started seeing A and B patients get results from the transcutaneous system.

Now, we see the external one as a diagnostic and treatment device. It will determine who ought to get an implantable one. Our devices will be for patients who have stroke, MS, cerebral palsy, parkinson’s, TBI, and of course SCI. But hey … if I can do blood pressure improvement for those groups, why not for the regular population? That’s how they’re getting all the money to push this thing forward.

They’ve published the papers that convinced investors, but it took a year or two for each one. A year or two for each paper, while they sat there with their promising results and their ongoing work, trying to get funding to do it faster, a year or two for each paper, because no sane investor would cough up money without peer-reviewed data. Years of peer review. While we waited.

Results to date:

38 subjects so far, success with 33 = 86% in getting voluntary movement. The subjective reports form all the volunteers say that they feel things like “the core of the body turning on” — this happens not in weeks or months but in days. We can get people to stand or move within a day. Then they all report back that they notice changes in blood pressure, in ability to perspire, in ability to feel the full bladder …

Nick chokes up and says “I’m sharing this with you because I know how long you’ve all been waiting.”

We applaud and wait while he gets it together.

Path to market release involves doing 30 or 40 subjects, then waiting a year or so for FDA approval — it should be 2 – 2.5 yrs until it’s on the market. In the meantime we’ll be perfecting and testing the implantable device — which will be WAY BETTER than the existing technology.

The existing technology, as interesting and promising as it is, doesn’t come close to what we’re eventually going to get.

Wait, It’s a Whole New Kind of Stim

(note: be patient with me here. It took some time to figure out what this presentation was about, but I got there.)

Carrie Shogren

Neuromuscular Electrical Stimulation and Optimizing Functional Recovery

Okay, dang — got caught up in some conversations during the break and came back 4 minutes into this talk. Total fail, sorry!

Jumping in: FES is the traditional electrical stimulation that most everybody already knows about. It’s what makes those bikes work. FES works by sending a little jolt of electricity directly to a muscle.

Activity-Based Therapy is the term used to describe anything that returns function AS A RESULT of an activity.

Neuromuscular Electrical Stimulation (NMES) is different from FES … it’s not epistim and not FES, but a sort of enhanced FES. It has all the same kinds of goals that FES has for patients, plus raising excitability of the nervous system and activation below the level of the lesion. Available commercially right  now, and I’ll find the company info later and put it in here. SAGE Tablet from Restorative Therapies.

They’ve been doing studies on people with Lower Motor Neuron injuries = below T12. The stimulation parameters are different, plus they stimulate multiple muscles all at the same time.  At Courage Kenny they do task-specific stimulation … the stimulation effect lasts for a while, even after the machine is turned off.

There will be a new system called Xcite, which just got approved in Canada and is pending in the USA. A lot of what they’re doing has come from the Harkema lab in Louisville .. it’s not feasible to have everybody implanted, and this NMES is the next best thing. It’s an intervention based on learning in the epidural trials and the locomotor training studies. A sort of intermediate step.

Dave Collins, Central Contributions to Contractions Evoked is the paper this is based on, if any of you care to read the data yourselves.

She’s showing graphic data that shows residual excitability after device is turned off. They’re activating the interneurons, which in turn activate the motor neurons … and another graph showing how they get multiple muscles to be activated together.

First time I’ve heard of this, so chime in if I’m misunderstanding, please. I think it’s a sort of backward epistim concept — like the stimulation of a muscle group delivers an epistim-like experience to the cord itself.

Huh. Waiting for her to show some data on how this has worked in practice to get people doing things like grasping, standing, and so on.

Spinal networks are sophisticated, they’re influenced by sensory input, they can learn specific tasks, they’re integrated in a very complex way, they’re what execute details of movement …

Principles for NMS  optimize sensory cues, maximize weight bearing on the legs, optimize the kinematics, and maximize recovery strategies

Yay, outcomes … been at it for the last two years. So far, they’ve done

  • 2 or 3 x a week intensive fitness program
  • Worked on chronic injuries
  • NMES outcomes so far:
  • increased sensation of full bladder
  • Less AD
  • Decreased time with bowel cares
  • Improved temperature sensation
  • Improved arm and leg function
  • Improved trunk stability

Some patients did just NMES, some did NMES together with locomotor training

Showing a patient who needed 3 trainers to get to standing, one each at trunk, pelvis, and knees, and got to where he just needed someone to stabilize his pelvis to get up. Asia A, T11

Another slide full of tiny data points, but the main idea is that over time all the patients improved in their upper extremity tasks.

Group Think! Time for a Panel

Moderator is Kim Anderson, panel is the two people who just spoke.

Q: Okay, so InVivo is now solely dedicated to SCI … is your company dedicated to the long haul? Because we (she’s in a chair) don’t have a choice about that.

A: Yes.

Q: How can we in the community help?

A: Ann Parr — we’re not ready to talk commercialization yet. When that day comes, we’ll have to partner with an established company or a startup. Right now look at Matt and Rob and GetupStandup and what they’ve done to become partners with us. We’ve been the beneficiaries of their work to get that bill passed. We also get money through the U of M foundation when it’s directed to our lab.

Q: in your pig model, what happened to the pig and how many trails do you think it would take?

A: What we’ve seen preclinically is still being evaluated — can’t say what happened to the pig because it was an early sacrifice.

Q: So how can we help you?

A: The open dialogue is very important in helping us understand what the endpoints we’ve chosen mean & help us defend the benefit of the clinical therapy at the end.

Q: Thanks for knowing that everything you do must be clinically relevant. How does the Rose-Bengal stuff compare to chondroitinase?

A: Rose Bengal is not cell specific, so we have to be super careful about where we put it. And it’s the case that CSPGs are not the only component in the early scar, and they’re not present in such numbers in the chronic phase.

Q: Wait .. so how do you know where to inject the Rose-Bengal?

A: We just put it right into the cavity, where it’s take up by the cells all around the cavity. Our goal has to be to understand dose and timing.

Q: In the inVivo results, you had 5 of 8 patients change their ASIA score — how do we understand that given that there is often recovery in the first days? How did you choose your patients?

A: Of course a large randomized clinical trial is the best method there is, but it’s not available to us. The regulatory pathway we’re taking involves showing safety and benefits that outweigh risks. (They’re approaching the FDA with a Humanitarian Device). Sorry, missed the answer to the 2nd q.

Q: Aren’t those ASIA scores kind of useless?

A: Yes, and we are definitely using other ways of capturing potential recovery to build a strong story of clinical good.

Q: How do you know that every injury involves a cavity? I have a vascular bleed …

A: That was a controversy in the beginning, but we’ve shown in large animal models that following a contusion injury there is spontaneous damage … we’re trying to develop imaging techniques to understand who will be a candidate for our products and procedures.

Q: Any comment from Dr Carr?

A: The issue with the insertion of the scaffold is that you can’t know how much recovery is due to decompression .. there are some interesting studies coming out of the UK now that show we maybe should be doing decompression and duroplasty after injury in the same way we do after a brain injury. However, if you can show that even if that’s the case, there could be a benefit later in avoiding problems down the line.

A: from Alex Aimetti: We have done surgical controls that show there are significant benefits in terms of changing the natural progression of the injury. We’re also looking at the downline formation of cysts and looking to know if we’ll be having

Q: Your subjects were very young … how did you talk the FDA into allowing that?

A: I don’t exactly recall that being a key discussion point … possibly the protocol is different for the Device  situation.

Q: As you develop these scaffolds, are you going to develop biomarkers?

A: We’re going to be very interested in what other labs are doing, but in our trial we’re not engaged in that.

Q: Dr Parr, you said you got some motor neurons but you’re focused on OPCs … are you looking at using them and transplanting both?

A: We’ve thought about transplanting the combination, but right now we’re looking at doing them separately and understanding how that works; we’ll have to at some point figure out which should go first.

Q: Reminder that relationships are what matters, and keeping them strong. (This isn’t a question, it’s just Matt.)

Q: Have you thought about having a consumer board to guide your research?

A: We don’t have one now, but we do have very good relationships with the SCI community in MN. Come visit us and give us your feedback. it’s very hard to keep up with all the literature, and there have been times when Rob or Matt emails me information I’d missed.

A: We’re ramping up our participation in conferences like this one, and trying always to engage the right people all along the way.

Q: (InVivo CEO chiming in to address previous questions) InVivo is focused on this because for so long SCI has been the place where there are zero therapeutic options. That’s why we chose to take it up, and yes, we’re in it for the long haul. I worked with Act Up way back when, and yes we want patient advocacy groups.

Q: Dr Parr, are you worried that your transplanted OPCs might produce the “bad” kind of astrocyte or molecules?

A: One of the problems with cell transplants is that axons routinely refuse to grow out the far side of an injury, probably because there’s something they “like” inside the injury site.

Q: Dr Aimetti, possible chronic timeline?

A: Optimistically, the work can be done in 2 yrs … realistically, a ton of things could go wrong so will probably take a bit longer than that. We’ll be out in the community a lot, being as transparent as we possibly can be.

Break time!!

Alex Aimetti Checking in from InVivo

Thomas (our excellent moderator from yesterday) wheels up to introduce Alex Aimetti , who is the Sr Director of Medical Education and Scientific Support at InVivo Therapeutics.  You should look this company up if you don’t know about it.

They’ve recently aligned and focused the company to only SCI. They have an acute program going; 1st person got a scaffold in 2014. And last December they started a new program aimed at chronics.

He’s addressing the acute/chronic issue … they’ve spent 3 yrs working on their acute scaffold project, but they know that the real goal is to get to chronics.

Ugh, series of colored sketches of a cross section of an injured cord after 2 hrs, after 1 day, and after 3 months. The latter is a big hole full of useless debris. So what’s the scaffold? It’s a bio-degradable substance that dissolves in a month or two, like one of those bandages they leave in you after surgery on purpose.

Okaaayyyyy. Video of surgery in progress. Shows them exposing the cavity, setting a little scale next to it, then (with tweezers) putting the scaffold right in there. What good does it do? It gives structural support to surrounding tissue to act like a bandage and preserve the integrity of what’s left after injury.

What happened when they put one of these into a rat acute injury? Lots of neuron sparing, much smaller cyst — and their slides show neuronal sprouting as well, along with Schwann cells.

What? Schwann cells live in the peripheral system, not in the central system … but they migrate.

So … their animal models worked well enough to get permission to work with people. It was designed as a 20-patient pivotal study with an endpoint of 25% improvement in ASIA impairment grade by 6 months post surgery. There are 23 clinical sites in the USA and Canada. They have 8 patients who have passed their 6 month window — and 5 of them have converted. One to ASIA C, 4 to ASIA B. All these people got implants within a day or less of their injuries. All of them were complete thoracic patients. Good news = zero adverse affects.

On to the chronic trials!

In the past, the method has been to drop a few million neural stem cells in a bolus injection right into the injury site. Their idea is to do that delivery differently, using a new injection device they’ve invented. Essentially this project is to create a new way to get the cells where they need to be and give them structure to stay there and do what they have to do — which is be a bridge between the working cells above the injury site and the working cells below it. They’re making a trail.

And that means building a machine that is an effective injection device, which they call a TrailMaker. They’ve tested it on uninjured pigs ….used their device to put human cells into pigs so they can be sure they have control over what the cells are doing & that their delivery thing is safe.

Like I said, have a look at their website.

Ann Parr and the Mystery of the OPCs

Glial scar ablation and neural Progenitor Cells for SCI. Ann is the director of spinal neurosurgery and an assistant professor at the U of M.

Title of Talk: Potential Beneficial Mechanisms of Translated Cells in SCI

Replacement of damaged cells, protection from further injury from inflammation and other processes — (which is called neuroprotection), creation of a favorable environment for regeneration, and demyelination.

Hey, she says we don’t know exactly why neural progenitor cells work when they do work. She was running one of the sites where people got neural stem cell transplants in the study Stephen Huhn told us about yesterday. Right now has a slide up describing the various kinds of cells, their sources, etc. It’s all in the book! Don’t Call It a Miracle.

We have cells from adults, fetuses, and embryos.

We have Schwann cells, Olfactory ensheathing cells, bone marrow or blood cells, and neural stem/progenitor cells ….the last ones are believed to be the only ones that actual could REPLACE damaged cells.

Talking about clinical, where there are 31 studies listed around the world for SCI, 11 of which are actively recruiting — 3 of them in the USA.

Who cares about neural stem cells? We do. They self-renew and they can turn into only 3 things — 3 cell types. And the 3 cell types are the ones that make up the central nervous system. Those 3 types are called neurons, astrocytes, and oligodendrocytes.

Why not just transplant neurons if you can use neural stem cells? Because neurons don’t replicate. Stem cells do. In her lab they started out working on what they call oligodendrocyte progenitor cells (OPCs) — these are the cells that turn into regular oligodendrocytes, which matters because these cells put the “insulation” on surviving axons.

In her lab they also happened to build some neural stem cells, sort of as a by product. More on that in a minute.

Okay. So what they’re working on now is taking adult skin cells, turning those cells back into embryonic-like cells using genetic methods, it makes sense to go through all that trouble because a cell taken from your own skin will be much safer.

Hmmm. It turns out that where you put a neural progenitor stem cell determines which of the 3 cells it turns into …. put ‘em in the brain & they turn into neurons. Put ‘em in the cord and they turn into astrocytes. So they wanted to use cells that were only going to become oligodendrocyte progenitors.

It took them a few years, but they got this working and transplanted them into mice successfully. Great! Move to humans … that, she says, turns out to be really, really hard. Talking about how to replicate the situation in a developing cord during gestation. They accidentally grew some motor neurons instead — and then eventually figured out how to make OPCs.

Cool. This woman is talking very fast & I’ll just say that I couldn’t possibly get the gist of this if I didn’t already understand it …

She’s describing an issue that many labs have run into when it comes to creating cell lines, which is that they have to be pure. Hers are. And they can be made in about 40 days. The next step is to put these cells into a spinal cord model and then show that they survive. They’ve put human cells into an injured rat cord already and shown that 95% of the transplanted cells survive and act like oligodendrocytes.

Right now they’re moving their technology to a commercial-quality lab on the campus of the U of M.

The plan is to have a person come in, give up some skin cells, wait while those cells get processed to become OPCs, then come back and get the cells transplanted.

Well then. We all know that this therapy hasn’t been all that great for chronic injuries, and she has a plan to deal with that. They’ve partnered with the Spinal Cord Society to add what’s called scar-ablation therapy. It’s this stuff that you put into the place where the glial scar exists, shine a light on it, and watch the scar disappear.


The stuff is called Rose-Bengal. They’re in the middle of trying out 3 possible iterations of it and analyzing their data. What they have — I’ll spare you the numbers — looks promising in the sense that the markers they can identify all show things moving in a good direction.

Also — strangely — there’s something they don’t understand happening in the cord as a result of the ablation process: increased serotonin at the site of the injections.

Thanks her team and the people who have funded this work, including the good people of MN and the legislators who responded to Matt’s team’s work.

Day Two, and Marilyn Smith Still Looks Amazing

Marilyn Smith welcomes us and extends condolences to hopeful Cubs fans. It ain’t over yet!!

The quality of the conference is determined by who shows up … and for some reason this is the most social conference we’ve ever had.

(My theory on this is that the destination resort known as the Mall of America makes everything very, very easy. Quick elevators right next to the meeting rooms. Endless acres of parking, endless acres of indoor stuff to do.)

She’s going through the business stuff, like how to get continuing ed credits here, what to do about parking, whether or not to fill out surveys (YES), the unbelievable effort that goes into making this thing a thing. It takes a zillion individual efforts and also lots of money, so make a donation if you can.

The first speaker this morning is another Minnesotan — Dr Ann Parr.

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