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Working 2 Walk 2016

Welcome to Minneapolis

Lyn Jakeman Tries Again Not to Be Nice

She kind of failed the first time. She really is a very nice person.

Lyn Jakeman is back to moderate some questions for the last 2 speakers. Back to Matt’s Conestoga Wagon analogy.

There was a lot of work leading up to the neural stem cell trials, a lot of handing off of

Q for Dr Huhn: Given that we have to spend so much money on ANY kind of cell, how do we choose? Which wagon gets its wheel repaired?

A: If you’re an investor you look at embryonic stem cells and certain adult stem cells … our cells came from a donated fetal brain after an abortion. if you’re an investor, that’s a factor you have to think about. There’s also risk factors. With embryonic cells, you’re always going to get some contamination of tumors forming. And these cells also come with societal issues. Then there’s the commercial cost of developing the cells. The idea of pluripotent cells, where you take one of your own cells and turn it into a kind of cell that you need, is super expensive.

Q: Lyn asks about efficacy of one cell over another …

A: He says basically that there are cells that are very safe (mesenchymal cells) but that don’t end up doing much, and cells that are less risky but potentially more effective. It’s a very, very difficult question.

Q: Is the patient population in a system like the Freehand limited by our existing infrastructure?

A: We have lots of experience with things like pacemakers and pain stimulators and baclofen pumps. When you get a pacemaker, you know that you’re going to be going in every six months. There’s a business model around followups … but because the one company that was making Freehand failed, no such thing exists for the patients who had it installed. We’re working on giving our patients the ability to make small adjustments on their own.

Q: I have Brown Sequard Syndrome; would cells work for me?

A: No reason to think not, but we don’t have data yet. (Dr Huhn) We actually test our patients to make sure the device will work.

Q: How does our healthcare changes help?

A: The technology has to fit into whatever the clinical paradigm is … we can’t just hope that there will be reimbursement.

Q: Isn’t there an opportunity for money to be sihifted if there are good outcomes?

A: Example of this would be how trunk strength, for example, might reduce incidence of pressure sores. We can bake that thinking in at the front of a study instead of having to do multiple studies because we didn’t think to measure it up front. A question that investors ask is, “How much are you going to charge for this?” And the answer has to do with how much money will be saved.

Q: Dr Huhn, did you see changes in the MRIs after implantation?

A: We were seeing functional improvement without that kind of change.

Q: Please talk about whether investors or philanthropy seems like a better path. And how much money we’re talking about.

A: We needed another $35 million to keep our study going. Some of that is trial, some is related to the clinical infrastructure. Stem cells burn on average between 2 and 3 million per month. Investors have been losing confidence in the regenerative space, because those outcomes were just not enough. But remember that for a big company, that’s a rounding error in the budget. The challenge that analysts and investors have is that there’s not much to go on when they’re calculating what ANY product is worth to the market. There’s no precedent because nothing has worked.

Followup: What if the community had been satisfied, excited about your results?

A: It’s still a hard case to make for investors. An investigator might take a 2 or 3 in 10 chance of a good outcome … but an investor probably would not. We also have to look at how investors get fatigued after a time.

Q: if i were an investor with 20 or 30 million, I could have kept Stem Cells Inc going?

A: You could have bought the company.

Time for the afternoon break! Made it.

Megan Moynahan

Thomas says he’s hoping someone will make it so he can hoist a bottle of beer. 🙂 Introduces Megan Moynahan, who’s here from Case Western in Ohio.

Story: In ’97, there was a thing launched into the market called NeuroControl Freehand. It started in ’86. They eventually did dozens of patients and created a product that really did allow people to pick up a bottle of beer … and their sales were matching things like cochlear implants. But the investors were expecting more sales, so the project ended and NeuroControl went out of business. It’s used as a case study now for what not to do.

What went wrong? Hospitals took a loss on every implant — as much as $25k. There was a slow uptake of technology, tho’ that should have been anticipated. There was always turnover in leadership — multiple CEOs over a few years.

There’s a guy in Germany who had one of these things implanted who used it every day for 20 years before it failed, and was able to get a new one in 2006 — but that’s unusual. When a company fails, it’s the customers who get screwed. Some have described this being like getting paralyzed all over again.

So where is this thing today? The Institute for Functional Restoration at Case Western is building out a new product that (I think?) is called the Networked Neuroprothesis. It’s being prepared for a clinical trial now. She’s got a slide up that’s about all the things that have to happen in order to get a medical device onto a commercial market. The left-most column has R and D, Intellectual Property, Business Development, Regulatory, Marketing, Manufacture and Production, and Coverage and Reimbursement.

And each one of those lines has its own path to its own endpoint, which means that the ongoing set of handoffs is ridiculously complex. What that means is that — in a small market like ours — all kinds of anticipating of the hand off is going to be an absolute necessity.

They have a strategy for commercialization that takes all this into account. They don’t look like a research org right now — they look like a small business doing device manufacturing, except they’re doing it completely with grants and philanthropic money.

Why?

Because investors must get return on their dollars. It’s their job. That’s why the promising neural stem cell trials we just heard about got the axe — because they were funded by investors.

It’s challenging, though. There’s not an unlimited supply of grant/philanthropy dough to make this happen.

So why do they have confidence in this project? Still no cure. Huge need for something that works. Some things have changed … they’ve learned a ton from earlier trials and products. These devices can function for decades — they already have functioned for decades. They’ve moved way past the hoist a beer goal, too. Trunk control. Bladder control. And others.

What should advocates be doing? Make our voices heard at the FDA. They’ve got a program that invites patient participation. Patient preferences need to be baked into the clinical trials process at the outset, not the end. The Michael J Fox foundation partnership shaped statistical analysis of clinical trials to reduce the risk that an effective therapy might be rejected. One place this can happen is in the size of the required sample.

Summary: they want to commercialize their product. They’re directly addressing business lessons learned from the past. They’re using grants an d philanthropy. They’re working with patient groups. That’s US.

Invites questions and feedback email mxm268@case.edu

Dr Stephen Huhn and the Neural Stem Cell Study

Thomas is explaining that the Mall of America has no heating system. What?! This is Minnesota.

Introduces Dr Stephen Huhn, who’s going to talk about Neural Stem Cell Transplantation.

The cell we were developing is a multi-potent stem cell — a neural stem call taken from one donated fetal brain. One. It’s capable of both self-renewal and differentiation. These are the 2 main things that neural stem cells can do — renew their own population and turn into the 3 main cells in the brain and the cord. If you can replace those lost cells after SCI, you can theoretically get return.

He’s showing pages from the papers published on animal models using these cells after SCi. They did a study of thoracic injuries with results that were promising enough to keep going. They were looking for 3-24 months post-injury patients — wanted 12 of them. And that took 2 years — just to find the patients. They went into a cervical patient study … he’s showing data that we saw 2 years ago in Seattle. Not sure why.

Annnnnnd we walk through all the data from both the thoracic and the cervical studies. I’m having a bit of a hard time listening to this, tbh — the end of this story is that the company that was funding this study backed out. The middle part of the story is what he’s describing right now, namely all the meticulous ways that they measured outcomes after transplanting millions of neural stem cells into damaged cords. How we measure success really IS a big deal, and not well understood.

The good news is that in these studies there were only 2 serious adverse events (an infection and a fecal impaction, both resolved) … but nobody got spasms or pain or lost function, even when they made the dosing much higher in their later patients. The cervical patients, like the thoracic patients, did get some sensory return. The results he’s showing us are called Minimally Detectable Difference. The problem they ran into was that their results were too frail, too modest, too not enough to justify more investment. Their patients got improved strength, but not improved function. You can measure activity of a muscle, but that’s not the same as watching someone open a jar. Right?

The investors wanted to see the jar get opened, it didn’t, so they cut off the spigot.

Image of a balance board with things stacked on either side: one side is therapeutic effect, unmet need, and funding support. Other side is risk, cost, and time. The struggle is always to make them come out even.

In Alzheimer’s research, there have been 1100 compounds tested. Only FOUR have been approved, and none of them are very effective. What we have from his team’s work is the knowledge that neural stem cells do no harm, have positive sensory effects in chronic thoracic injuries and positive motor effects in chronic cervical injuries. Not a failure, but an outcome and we need to know about it.

Lyn Jakeman (NIH) Tries Not to Be Nice

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.

David Darrow = Great Guy

Thomas returns with a couple of bad jokes and an introduction. Next speaker is going to be David Darrow, who works at the University of Minnesota. I think he got funding from the Matt team’s efforts at the MN legislature.

David Darrow: After years and years of failure, it seemed incredible that a device already on the market that I already knew how to install and had been installing …

  1. Disclaimer: funded by St Jude
  2. disclaimer: gonna talk about off-label use
  3. disclaimer: not an sci researcher; I’m a neurosurgeon.

Usually I’m in my lab doing nerdy things … (data visualized slides). And then someone pointed out to me that the cord is really just the bottom of the brain. And so we came up with a plan to do really, really, really deep brain stimulation. (laughs)

So he was at Hennepin County Medical Center, and during his time there he’d see a couple of new SCI patients every week … and that was about as excruciating as you could imagine. The worst is telling another family or patient that there’s nothing he can do.

So during that first six months, he happened to hear about Reggie Edgerton’s work. And he decided to go ahead and try his own trial. What are the barriers to clinical use? Reproduction and optimization. Once this thing gets approved, what are going to be the barriers to getting it to patients?

I knew that this was going to be a big problem.

So they started a human trial, with the goals of verifying current results and getting more numbers, and then removing the barriers to neurosurgeon deployment, which begin with getting the stimulator setting right.

He’s showing a slide with the 7 different MN orgs/groups that had to be part of any clinical trial he was going to get up and running. It was a huge team of partners who would all have to be involved in it. And we could ONLY do this because of the seed funding that we got through the MN legislature.

They do a lot of very complicated, risky surgeries, right? Surgeries that take 10 or 12 hours. This  epidural stim surgery is 45 minutes, and very simple. Think about doing one of those vs. talking to the people who just got a new injury, week after week.

So, let’s think about SCI as a neuromodulation problem. The outcome would be volitional movement. They can adjust all kinds of parameters, which means there are tons of options even for the devices they have now. 160 different frequencies, 100 difference pulse widths, 256 different amplitudes. If you use Brute Force, you could try them 1 at a time and that would take 60 years. Instead they use what they call response surface modeling — a mathematical tool that takes input by the truckload.

LOL, they built an app so that patients who get the early devices can contribute their bits to that truckload of data. They already have this working. When there is data coming in from lots of patients all over the place, they can create a sort of map that shows what works and what doesn’t.

All those parameters … 60 yrs taken one at a time.

They use the Brain Motor Control Assessment … looking for volitional movement, but ALSO looking at things like urinary control, cardiovascular improvements, sense of well-being …

Now have approval and are ready to go. Enrolling their first six patients.

One of the least enjoyable things in medicine for me is the business side of things … it’s sort of slowed us down. To move things along as fast as we can, we had to find a good partner. We’re waiting to hear back from the FDA. As soon as we get preliminary data, we’ll be expanding.

We also have a colloboration with the vet school, because there are a whole bunch of dogs with spinal cord injuries. And we’ll be tracking that data as well.

@daviddarrow on twitter, Darro015@ umn.edu is his email

Dr Lee et al … the Mayo Clinic

Matt hands off the program for the 2nd half of the morning and the rest of the conference.

When I first met Thomas he was Wii boxing with Gabe at the Courage Center; kicked his butt… he was using a power chair at that time. Thomas is sitting there in a manual chair nodding and smiling.

First up will be Kendall Lee from the Mayo Clinic. He’s a neurosurgeon who has done implants for Parkinson’s patients. About 5 yrs ago a doctor came to him and asked if that couldn’t be done for SCI patients … why not? And then he got called to a dinner where he happened to be seated next to Reggie Edgerton. It was the first time he’d heard about epidural stimulation.

I’ll be honest. At that point I was very dubious. Everything I’d been taught said it wouldn’t work.

So it’s very important for people to be able to replicate results. Because of that, we embarked on this project with Reggie as our collaborator. They got funding from the Mayo Clinic, from the Neilsen Foundation, and others.

Many scientists have shown that epidural stimulation works in animals. (Showing a rat with a complete transection of the cord, strolling along on a moving treadmill.) Can we do this in humans?

Dr Harkema has published data on 4 patients who have regained some function by way of epidural stimulation. So our first goal was to replicate this study. We’re in the process of doing this; we’ve got one patient recruited and are about to recruit more.

And he nvites Dr Zhao  to talk about the inclusion criteria for this study.

  1. Non-Progressive SCI between C7 and T10
  2. ASIA A or B
  3. At least 2 yrs post injury

Timeline from enrollment to stimulation is 27 weeks of rehab followed by surgery followed by 3 weeks of recovery, then stimulators turned on. Then exercises with stim.

Their Patient One was complete ASIA A with zero detectable sensory or motor connections. This person went through the 27 weeks of rehab, just to be sure. No return.

Showing the surgical team of 7 doctors and 1 patient … they implanted the electrodes into his epidural space (shows a quick video of that in color closeup!) There are 2 wires coming off the set of 15 electrodes. This patient’s injury was L1-T11.

Another doctor (Peter Grahn) comes up to talk about what happened during the 2nd day after the post-surgical recovery. Showing a video of the patient trying to move his leg without stim and with it. They got him to move his legs in response to both visual and audio cues … meaning that info from his brain was somehow getting to his legs WITH STIM only applied far below the injury site.

Next steps: 8 months more with first guy. enroll subject 2 investigate mechanisms in animal models.

Long term: enroll 10 subjects, establish subsequent clinical trial on ASIA A, B, and C. Optimize rehab training paradigm — meaning make it efficient and able to maximize recovery.

They’re initiating this next phase right now. Their Patient #1 is still making progress, and they’re trying to get this data published.

They’ve successfully replicated the Harkema results, in other words. This is excellent news.

As a neurosurgeon, this is one of the highlights of my career.

Michael Wolfson from NIBIB

Matt’s back to introduce Michael Wolfson, who’s the Program Director in the Division of Discovery Science and Technology at the National Institute of Biomedical Imaging and Bioengineering.

Progression is advocates — state legislators — federal legislators — federal agency

Michael Wolfson doing an overview of NIH’s spending, which NIBIB is part of. 90% of NIH money goes to non-government places … NIBIB is one of the smallest of the 27 Institutes and Centers at NIH.

(Don’t care about most of this background, who gets what money … at least not as he’s describing it.)

Okay, NIBIB has a long list of program areas, but he’s here to talk about just one of them: rehab engineering. What informs funding at NIBIB, congress, the Dod, the NIH, obviously, but also US .. along with other agencies, academics, and clinicians.

Ah. got it.

He’s saying that because of how is research funded, we have to inform the people who ASK for money, too. They’re the ones who write the grants, so if they’re asking for money to do projects we don’t care about, the things we DO care about are less likely to make it through the funnel.

Neuromodulation is what he really wants to discuss. There are 3 main categories. One is brain control, which would work on every level of injury. It’s high risk, and so far there is only modest function return demonstrated. Another is to bridge the gap in the cord. It could work with MOST levels of injury, it has only a modest risk, but on the plus side it’s very mature. A challenge is that it’s hard to scale. The 3rd is to enhance residual capability. It has modest to low risk. It’s an immature technology, and there may be limits to how well it works.

Talking about a device being worked on at the University of Miami. It works by reconstructing motion from neural information. Then there’s 2nd generation FES … where there are now clinical trials underway, and we’re going to hear some more about this later in the program.

Bionic Enhancement Olympics! Hadn’t even heard of this, but it happened in Zurich right after the Paralympics … wow. Video of people having fun and competing. This ain’t a parlor trick, it’s a way to try this stuff out. Check it out. Cybathlon

Hoffmann Reflex can be retrained to improve walking capability in incomplete patients. Can complement  other rehab therapies. Has been in testing since 2013.

Epidural Stimulation, which enhances residual capability. Showing a guy wearing an exoskeleton and walking with transcutaneous stimulation. NIH has a whole set of programs focused on the brain … there’s also a whole set of efforts to take advantage of peripheral activity (SPARC).

Can I just say that I really hate these overview-ish presentations? You can’t take all this high-level information in nearly as quickly as it’s on the screen.

Back to this slide: Research — applied research — development — first in human — FDA approval — payer approval.

That’s the path from good idea to let’s go buy it. And it’s not a linear path. Sometimes things that worked thru the first three steps fail in humans, or have side effects that the animals didn’t experience or couldn’t tell us about.

Oof, he ends.

And it’s time for a break, good grief.

Congressman Paulsen (R) MN

Matt is back up again.

(Jeebus, this room is CRAMMED. People clustered in the doorways because there’s no place to put them.)

Congressman Paulsen … think he’s a MN representative to the US Congress? Says this is what it takes — this room. Here to share a federal update. First, USA is a leader in healthcare. Talking about the tax on devices and a 5 yr effort to suspend 2 yrs of that tax. Claiming that the result was seen almost immediately in companies large, medium, and small … suspending that tax allowed them to move their initiatives forward.

Okay, wait. The tax was there to help fund the ACA, right? The ACA only passed because that tax was part of making it revenue-neutral … so tradeoffs. The ACA makes it possible for all the people in chairs to not sweat the old pre-existing condition exception for being able to even have insurance. I hope they found some other funding source.

He’s co-chair of the medical technology caucus. Says he’ll be a strong advocate for us. “I will always have an open door.” Alrighty then. Let’s hold him to that, peeps.

The Minnesota Legislators Tell It from Their POV

Now Matt’s introducing the senators who helped get the MN funding bill passed. There are four of them (2 Rs and 2 Ds, if you care).

Primer on government. States have senates and houses, and bills have to go through both before they can become law. We have these 4 people here to talk about how they experienced the process of getting this money to research in MN.

Rod Hamilton talks about sitting in his office one day and seeing a couple of guys in chairs roll by. He has MS, so he called them in to talk about wheelchairs. They told him they were looking to get a bill passed, and he offered on the spot to become the chief sponsor of the bill they had in mind. Jokes that they worked hard to get it done because it turned out that these people in chairs were such a pain in the ass.

Terri Bonoff was Chair of Higher Education/Workforce Development in the MN Senate. We have a precedent for getting this kind of spending into education budgets. When Terri’s daughter was in high school, one of her friends was in a car that rolled … remembering this trauma was one of the reasons Terri was so prepared to work on this bill. Describing collaboration with other senators working on funding for Alzheimer’s.

John Hoffman says that these conversations should never be partisan, and this is one case where they just weren’t. He’s describing the rapid aging of the MN population — very soon, lots more people needing support in old age than needing education. In that context, this bill had to be seen as a use of resources that was appropriate. There were also serious conflicts with people in the dis community who wanted money to go in a different direction. Painful conflicts.

So who’s hanging out at the capitol? Not advocates. Lobbyists. If you’re there every week instead once a year, people recognize you and take you seriously. Matt and Rob’s team was.

Talking about the personal connection that people had already made with legislators when the committee held its meeting, and how that set of personal relationships drove the meeting where key members got on board with the bill.

Tony Albright is saying that he’s known one of the advocates for 20 yrs through a church connection. He ran into this person (Joe) one day and asked what he was doing in the capitol. Joe described the project, and Tony invited him to come up and talk … so Joe comes along with a bunch of his friends in chairs. Tony took it seriously, and not just because of Joe but because we have to take it seriously when citizens show up to ask for ways to become part of the society we share.

Sometimes, he says, you underestimate your impact when talking to your legislator. Why? Because what we deal with is giant numbers, intricate budgets, 3-dimensional chess/politics … but if you put names and faces and compelling stories in front of the people who will have to cast votes, you can break through all that. When we get to deal with personal lives and stories — and I’m seeing my friend Joe at church every Sunday morning — I feel it that I’m this guy’s voice. He’s counting on me.

It was easy to get this thing passed.

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