Jenn sits with inventor of the Neural Sleeve, Jeremiah Robison

Transcript

Jenn

Welcome to the MS news today podcast. I’m your host Jim Powell and I also have secondary progressive multiple sclerosis. I’m a columnist with MS News today at multiple sclerosis news today.com Thank you all for listening to this podcast. Let me invite you to join our MS. Forums, We have over 1,000 active members discussing common themes and sharing their experience on living with multiple sclerosis.

Please consider joining You can find the link to the MS news today. Foreigns in this episode’s description Welcome to the multiple sclerosis news today podcast. I’m your host, Jen Powell. Today we have the pleasure of speaking with Jeremiah Robinson. Jeremiah Robinson is a founder and CEO of Cionic and innovative company, that builds lightweight and durable bionic clothing driven by powerful algorithms that adapt in real time.

To each individuals. Mobility means he started the company. In 2018, after his daughter was diagnosed with cerebral palsy and he was frustrated at the lack of effective technology available to help improve her mobility. For years later Cionic, introduced the breakthrough, FDA cleared scionic, neural sleeve. First product to combine sensing analysis and augmentation into a wearable garment.

Prior to psionic Jeremiah spent 20 years of the intersection of data algorithms and the human body driving innovation and sensing and machine learning at Apple open, wave systems side and Java, Jeremiah has a BS and MS. In computer science from Stanford University.

Jeremiah

Thank you so much for having me.

Jenn

Well, it’s quite a pleasure and as stated in our introduction into 2018, you founded Cionic and in doing so you made a personal commitment to your daughter who has cerebral palsy. Can you let her listeners? Know what that commitment was? Yeah, I mean I have a career in startups and, you know, you you make commitments along the way with it investors or users, but it was a really unique and special founding story for me and having a daughter with a mobility difference, by rabbis reward policy.

Jeremiah

You know, I was very frustrated, there were just not a lot of options, not, a lot of solutions available to her, and I knew that, if I was gonna make this commitment, failure was not an option. And so I spent a lot of time working researching and making sure that I could make a difference for her and for the community at large before before starting the company.

Jenn

So in in starting the company and helping her, you came to develop the neural sleeve, can you explain to our listeners? What? This is as multiple sclerosis news today has done stories about this, but I would like to explain in layman’s terms, what the neurosleep does. Absolutely. The neural sleeve was really motivated by two clinical experiences that we had.

Jeremiah

With my daughter. The first one being date analysis, we went to Stanford University, they put on EMG sensors to look at which muscles were firing, and how they were firing in her in her legs, and they put on these little reflective dots to that knot, her kinematics update her, how her lens are positioned in space, and they wired her up for two hours.

And then they had her walk five steps forward, and five steps back and gave her report that was, you know, 20 pages long and said this is how your daughter walks. The second experience was with functional electrical stimulation, in her physical therapy, and they put on these electrical electrodes and on different parts of her body.

And her therapist walks behind her with two switches. And manually is firing the stimulation to activate muscles into different times. I thought. Well, these are both really interesting experiences but they are really confined and limited to a very controlled setting. What if we could take those two technologies? Combine them into something that someone could wear at home wear out in the community every day and actually power them by a complete closed loop system of algorithms, that could sense and then respond to the needs of that user.

Jenn

And that was how the psionic neural sleep was born. Amazing. I have seen video and pictures of your daughter walking with that and to see that functionality on her and then see what the end result was being the neural sleeve is quite amazing. As many of us with MS know who have used an FBS device that they can be cumbersome and uncomfortable and you took it one step further and thought about that when creating the neural sleeve and tell me about the design and and the fit and how that differs from most FES devices The this at the start you know the inspiration was how can you create something that does looks feels?

Jeremiah

And where’s like a garment like a pair of tights? That was the original inspiration. Can it be a pair of leggings that someone can pull on and what does that do in terms of you know, eliminating the stigma that sometimes comes with a system devices? How does it address more of the group?

The muscle groups in the body? We have to you know see these functional electrical stimulators one, maybe two different muscles. Can we address the full neural muscular system? And three, can we use the body and that registration on the body that you get with clothing to help? Make it easier to use easier to wear and be more precise and it’s delivery of this therapy than anything that’s come before.

Jenn

In doing so I think compliance is everything because you’re going to have a device that people simply won’t use. I am guilty. I have had a FBAS device fitted with one and the cumbersome nature of it. And again easement has an advocate, the stigma associated with it. Sometimes shies me away from it.

Jeremiah

The neurosleep in watching it on people, it is just like a leggings. It is very, it’s very comforting warm fitting and it does target the multiple muscles and locations in the leg necessary to be able to create mobility in a sound fashion. I’m fascinated, by the way, it is able to also help someone do physical therapy, not only work well in motion, but work doing physical therapy with yourself.

Jenn

Can you extrapolate on that? Yes. So one of the is growing trends as we in technology is that we actually try to think of the the whole challenge, the whole problem and how the continuum from rehabilitation to assistive is really a complete experience. And so while I think the star and hero feature of our system is continuous all day dates support.

Jeremiah

We know that there’s also an opportunity to help build strength, build neural, plasticity and actually practice if you will the, the sub components of gates. So we have exercises that do stimulation functional electrical stimulation and to raise and calf raises and knee extension, and all of those help to build up some of those neural pathways so that when we put that all together with gate, then you know it is a better overall solution.

Jenn

Absolutely, and a better experience with mobility because as we know you know, correct mobility is integral to those a bit us with severe foot drop to anyone who can’t ambulate properly and the devices available today are just not addressing. All of the comprehensive needs that the neural sleeve does.

In your vision of the neurosleep, I mean from inception to when you finally saw this. What was that compared to watching it affect the quality of life of somebody with? MS, or someone who couldn’t amulate properly. What I mean I see was a scientist but I also see you as a father.

But in seeing the practical application, what was that like Really two big aha moments that made me feel as though we’re doing something special and the first was with my daughter and what was You know, so important in our initial building and prototyping and iterating was, can we deliver this?

Jeremiah

As a as a full system that is sensing predicting, what is that going to happen? The body and then deliver a real time therapy when we first got our prototypes working, it was just on a single muscle and then we got it up to two muscles and then we got it up to three muscles and then we finally got it to the full leg and the when we finally got into the full leg and my daughter walked with that system.

For the first time, there was this amazing step change. And in retrospect it all seems obvious that Date is a very complex sequencing of multiple muscles in the body and if you are doing one muscle, maybe you’re getting a little bit of incremental improvement. But for her, it was really when we had all four muscles being sequenced at the perfect sequence of gate that she saw this step change in for her.

It was a reduction in crouch gate, which is very common with cerebral palsy. Now, we’ve see this in our lab trials. We did. We’ve had 32 individuals in our date study analysis that we’re really focused on on foot drop. But what we saw on what we heard in these back-to-back tests, whereas like try without stimulation, and then with stimulation, is that this cognitive load this fear and the, I have to pay attention to every single step when they got up to four muscles, it started to really reduce that cognitive load.

So that was the that was the big first, aha for us. And got a second again. Yes. And this second aha was sending people home. So now we’ve got 15 people who are using this system at home on a regular basis and what they’re saying is that continuation of reduction of cognitive load reduction of fearability to participate out in the community and do the things that they love.

And with, that is coming, not just increases to mobility, which we expected, but also a reduction in pain, a reduction in fear and anxiety. And these things mean that we are actually addressing the whole patient and their whole experience. Which was, you know what we set out to do in the first place?

Jenn

Did you ever envision though? When you first started for your daughter? How much this would impact those with other neurological diseases? Because as somebody, who can very much relate to the cognitive load, I walk completely in my brain step. Here, don’t fall walk here, lift your leg and in doing.

Jeremiah

So, not only do I attend. I’m filled with tension and anxiety, but I miss out on life because I am scared, if I’m somewhere and I need to go use the restroom in a restaurant. I’m already thinking, is it worth going? Can I walk there? Can I get there?

Jenn

What if I what if my assistant device doesn’t work? So in addressing that you are absolutely affecting the quality of life because quality of life is Very much under rated I think. And in in the neural sleeve I have seen videos of people, literally crying because they can ambulate and in ambulation and fully ambulation with the neurosleep, you’re allowing people to let go of those fears.

Jeremiah

Yeah. I mean the short answer to your question is we didn’t know how big the community of mobility impairment was I mean we knew the cerebral palsy community, my wife and I both are very active in the community. She started in the nonprofit to help other families, like ours, learn what options, and how to celebrate their child not, you know, and and, and, and give them opportunities to be in the community.

And through that we learned about the stroke community, which is very similar in nature to in terms of it being a one-time brain injury. But you know I talked about starting the company by myself, making sure this wasn’t just you know one father’s hope for one child, really understanding the business of it.

35 million Americans mobility impaired, more than 200 million worldwide, MS, Parkinson’s, spinal cord, injury stroke. You know, these are, these are large and growing communities of people, for which there’s been very little technical innovation and such a, such an unmet need and, and, and why we’re seeing, you know, just a tremendous amount of inbound interest and, and people with saying, like, how can I help, which is, you know, such a wonderful point of view, or people who are have these impairments themselves of wanting to help others with those same conditions.

Jenn

Well, I think in the absence of a cure even with so many disease, modifying therapies, we really have to look to see what we can do about our symptomatology, how we currently are, and how we can live better currently, instead of, you know, just live for that cure because it may or may not happen, but many diseases, don’t have a cure and I think what you’re doing with elevating the quality of life is you’re giving people life, you’re giving people Full life.

And I for one applaud you for that on March, 8th 2022, the neurosleep gained FDA clearance as a class, to medical device. Tell me about that day. It was huge for us to, you know, in the world of developing true medical innovations. You have these three steps first is does the technology work does the therapeutic work?

The second is, is it regulatory clear to market and sell? And then the third is, you know, hey who’s it? You know, who’s, who’s buying it? How it, you know, how many people are out there? And so when we started it’s, you know, you’re it’s a concept, you know, it’s it’s, it’s very raw technology and we’re slowly iterating it into something that is beyond the technology.

Jeremiah

It’s a product. It’s something that’s people’s you are using, and then we take it into trials and it works in trials. And we actually saw 94% of our travel, participants having positive improvements to gate, which blue are minds. You know, you think about a drug if it was that effected it that would be it.

Such a huge deal but then you’re still that hurdle, right? Make just because we say it works doesn’t mean we’ll be able to market and sell it. And what I appreciate is that our team embrace, the FDA that regulatory process from the beginning, which is critical. We’ve seen a lot of technology companies need to run a monk of And we knew that this was part of the process that FDA is there to make sure that technology is safe and effective for the users.

And so going through that process from the initial Q sub meetings that we had, you know, a year prior to the final submission and acceptance. It was every step of the way, making sure that we felt, you know, we felt good that FDA felt good and that we could actually show that the product was safe and effective.

Jenn

And I think it and being a father with someone who you can really see how this can affect your daughter’s life. The quality of what, I think that gives you a rare perspective on your passion for why you begin this journey as opposed to someone who maybe would not have any context, and how this could affect someone or the absence of usable technology to enhance the quality of life or mobility aid.

And I think that that lens is rare and someone who can start a company and facilitate a need like this. Yeah. Yeah, and it’s critical. And I would say this for anybody who’s starting in company, but especially if you’re starting a company in healthcare, a lot of ups and downs.

Jeremiah

You have to have some motivation and some, you know, mission that can help you ride out. Those really tough times as you move along, and what’s started as my daughters story. And burnt journey has now turned into the journeys of a number of other people that were working with.

And, you know, every every time I get down, I think of them and and they’re actually lovely at reaching out to me and and making sure that they’re Sharing their stories, and those stories motivate us. They motivate our team and in, and that’s the other thing when you’re starting a company, right?

You? Yeah, we’re not Google or different Facebook. We can’t pay people the amount of money that it takes. It really does take a mission and it takes people who are A hundred percent committed to making that change in the world to do something like what we’re doing.

Jenn

Well, mission accomplished but I know it doesn’t stop here as a serial entrepreneur.

What is next for you?

Jeremiah

Well, we have our very first product with our very first indication. And what we’ve done and as we’ve built this out is think of this as really a platform technology that accelerates innovation within mobility. And our grand vision, there is we’ll build additional form factors of this technology ones that can address not only lower, limb mobility issues, but also upper extremity mobility issues.

But the real vision is, how do we actually enable others to build new solutions in software on? And we’re really lucky to SDAs out ahead of us on this as well. They passed some guidance called software as a medical device and that guide and is in an anticipation of more things like us where the the huge and costly challenge of building out.

Hardware, then can give rise to new software programs that can address that longer tail in our case of mobility. And so, how do we make it really easy for researchers clinicians and and developers to easily gather new data. And that’s why the sensor sensing is such an important of what we do.

Then develop new algorithms, new interventions, whether they’re combination therapeutics, maybe that we develop with it, a pharmaceutical company or some diagnostics of tracking progression of disease. Then they can deploy that back to the body and get it regulated just like an app on the iPhone. Maybe cognitive behavioral therapy for psychology application.

We can do that for mobility. And just imagine the acceleration if it no longer takes six years in 30 million dollars to build one medical device, but you’re actually getting new solutions at software speeds and software costs. But that’s amazing in helping people in real time. I think it it is amazing to know that the duality it actually having the sleeve and having the innovation that you’ve developed and scionic is helping people.

Jenn

But the, the practical application to what I’ve seen on video, and what I’ve seen on your page is astonishing. I see it from an end user. I see this patient. So, is and, as many about listeners do, and as they hear this, I imagine they’re curious. Are they a fit for this?

And who is the best candidate for this?

Jeremiah

The our clearance is for anyone with an upper motor neuron disease. Now what we’ve seen, as we’ve gone through trials, our best success cases are folks who have either foot drop or a toxic gate. Something that where there is a high cognitive load, as we talked about earlier, and where fatigue actually is a big challenge, not just physical fatigue, but the mental fatigue of walking, and so MS.

As a general category, we’ve seen individuals who only see gate impairments as they get tired all the way to people who may be in in a walker. So it’s a pretty broad range of individuals that we’ve had success with within MS. And we’re always growing gathering more data to help understand where there might be, you know, additional opportunities for us to help.

Jenn

I know that we are going to have a description of your bio and how to read more about the neurosleep in this episode’s description. But where can people go to read more about the neural sleeve scionic and all the you do? The best places to ionic.com. We have our information not just on the product itself, but the trials that we have run, there’s an opportunity to sign up for future trials, as we bring more of those on.

Jeremiah

We have a blog that talks through the number of the different, you know, anecdotes and stories and observations that we’ve had along the way. So that’s that’s going to be a great place for anybody who wants to go and find out more terrific and tell us about your daughter.

Jenn

Did you keep that commitment? That my daughter is our first test pilot of our system. And that’s you know we like to think about all of our users as as test pilots as astronauts as people pioneering, the future of mobility technology, they’re there in themselves taking, you know, risks in their risks of of hope.

Jeremiah

Right. And I think that’s one of the things that I continue to have over my daughter and seeing her make her progression. She is gaining in, in her own independence, and we’re hearing those stories from our community, and there’s but there is so much more work to go. We’re just getting started as as you said, and it has been a wonderful opportunity and and interestingly through covid where it was difficult to find new, participants, I had my very own test pilot at home and we had a lot of opportunity to work together and Find the system in the algorithms and get her feedback on.

And that’s part of where, you know, this whole design thing you design initiative came from is like, I do not want to be other, I do not want people to say, you’re different to look at me and look at like, oh, what’s that thing? And, you know, she’s got lots of great products.

I see is as well. So we have one sleeve that has all of these amazing lights in it. Just so there’s she’s like, look at this. Like I’m like crazy. Yeah, cyborg, so it’s so wonderful to have the whole family, my wife. As part of this mission and that fuels me and and, and all of our team has their own stories on, on how they’re fueled by this mission.

Jenn

I’m going to just say you met that commitment. I’m going to say it because it’s one thing to help your daughter’s mobility. It’s a another thing just celebrate and have her celebrate herself and not shy away from that disability and it’s a lesson to all of us and how we grow and adapt to ourselves and get over hurdles that we each face.

They’re not unique to disease but to everybody what message would you like to leave our listeners? Well, leave you with that? You know, the the biggest thing that I always want to share is You know, there there’s a growing interest to growing commitment, a growing set of technologies who are committed to working on these challenges.

Jeremiah

We need you and we need your help to understand, you know, even for me, coming at it from my my daughters condition, it’s difficult, unless you’re living with it to really understand it. And anyone who is out there who is either wanting to contribute from a technology perspective or test out and trial new devices.

Please, please come find us because it is helping to create a new set of possibilities for the future.

Jenn

Well, Jeremiah Robinson, thank you for your time, and thank you for your innovation, your genius, your passion, your hope and your desire to make the world a better place.

Jeremiah

Thank you so much for having me.

Jenn

This has benn an incredibly joyful conversation for me and I look forward to to continuing it in the future. I look forward to having you back and thank you for all of our listeners with the multiple sclerosis news today podcast. I’m your host, Jen Powell