How the Steven & Alexandra Cohen Foundation Supports the Lyme Community with Their Senior Program Officer Bennett Nemser

Bennett Nemser Image

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Hi, welcome back to the Heal Podcast. Today, we have Ben Nemser and he is a senior program officer at the Steven and Alexander Cohen Foundation. Ben’s role is also the director of the Cohen Lyme and Tick-borne Disease Initiative, which provides grants for organizations focused on helping the Lyme warrior community. And since 2015, the initiative has dispersed over $60 million to more than 25 projects and they recently launched the Lyme X.

INTRODUCTION AND HIS WORK AT THE STEVEN & ALEX COHEN FOUNDATION

Mimi: Ben, thank you so much for coming on today. I’m excited to talk to you about all that you’re doing at the Steven & Alexander Cohen Foundation and also the initiative that they started this year. So thanks for coming on. And so if we could just start out with your role with the foundation.

Bennett: Sure. So I’m the senior program officer here at the foundation and I work on the Lyme and tumor disease portfolio as well as some of the other health initiatives. And so really I manage the grants. So look for the best candidates, present those proposals to Alex and the leadership and see which one they liked the best and then sort of manage those grants if we were to fund them.

Mimi: That’s great. An interesting fact that I learned recently was that the foundation, they’re the number one donors to the Lyme community out of any organization.

Bennett: Yes. We’re the number one. We’ve provided over 60 million in the last five years. That’s actually 60 million dispersed and then we have a little bit more pending for future proposals that we’ve commitments that we’ve had. And that would include the LymeX innovation accelerator, which is a new $25 million public private partnership with the Department of Health and Human Services.

Mimi: Right. And so could you talk a little bit about that? I’ve found out about it in the fall when I was on a Lyme Summit where it was announced. And since then I took part in, I think you were on it too, that I don’t even know what that was. It’s some kind of study.

LYME X INNOVATION ACCELERATOR

Bennett: So, LymeX innovation accelerator really is a partnership between a foundation and an HHS, and it’s got basically three parts. So we basically be sort of co-funding this program. One is called Health Plus, and that is basically patient centered design, or I shouldn’t say necessarily patients… Human centered design approaches for the space, right? So the idea is that HHS is bringing together with a third party, so basically a third party is pulling together clinicians, patients, any sort of stakeholder in the Lyme space and bringing them all together to say, “Okay, what are the problems? What are we seeing as the challenges that each one of you are facing?” And then collectively trying to understand what are the biggest sort of gaps and barriers that face the community and ergo, that can be where HHS designs their programs to alleviate. So it’s really, long story short, it’s basically like a qualitative, qualitative data analysis study of the space. And then again, since it’s working with HHS, it’s basically part of their work and so I can integrate into their policies more easily.

Mimi: Mm-hmm (affirmative) mm-hmm (affirmative). And so that was the first part of LymeX but there’re other parts?

Bennett: Yep. So then the next part would be basically, it’s more education and awareness. And then the third part is around a diagnostic challenge. So the idea, and that’s like the biggest component of it, right? So the idea there is, it’s basically a challenge to all innovators out there, whether it’s universities, private sector, whomever wants to enter and basically find the next generation of Lyme diagnostics, right? So we’ll be designing a competition where basically applicants or committees will submit their technology and they’ll have to meet certain thresholds and move towards FDA approval and whoever does it first gets the prize. And of course, some people, you hit certain milestones and everyone’s going to, I should say everyone, but I subset will get smaller awards so that they can keep pushing. And then there’ll be a grand prize at the end of it. And then the big prize for the lab community is that we get better diagnostics.

Mimi: Right. Let’s see what comes out of that.

Bennett: The Lyme community, I mean, I’m assuming I’m preaching to the choir of people that the diagnostics are incredibly poor. I shouldn’t say that they’re the worst diagnostics on any disease because that’s probably hyperbolic, but physically in areas where, or certain times during the, the illness, I mean, you’re looking at 50% sensitivity, which is essentially a coin flip when you go into the doctor’s office and that’s not where anyone wants to be in any disease.

Mimi: Now, how long do you think this LymeX… How long is the challenge for?

Bennett: Okay. That’s a good question. So the Health Plus part, right, so that human centered design part, that’s quick. That’s going to be in the first basically few months of this year, right. So the idea is that they’ve already started conducting the patient and the clinician interviews that you were involved in and then we’re moving now towards some of the workshops. So there’s sort of coalescing all that information and then sort of getting a group or subset of those people together to kind of discuss the findings and say, “Okay, what are the things that we actually really need to address?” And then there’ll be moving into some of the sort of education and awareness stuff throughout this year. And right now we really just started the design. We just did the contracting with the group that’s doing the competition, the diagnostic competition. So we’re basically designing it now and the competition will likely open depending if everything goes smoothly, about 10 to 12 months from now. So probably at the end of the year or at the beginning of 2022.

We’re the number one donor for the Lyme community. We’ve provided over 60 million since 2015.

That’s then going to be open. It’s going to be certain phases. So the first phase would say, “Okay, again, what’s in this design process, if this is all. I’m basically just modeling this off of kidney X, right? So kidney X was a similar project for kidney disease. And I don’t know if you don’t know much about kidney disease, but similar problems of Lyme. People have been doing the same exact dialysis for 40 years. There’s just been no innovation in the kidney space. And so they basically had the same idea and you sort of have a success of phases of the prize. Right. So you’ll have an easier level to get in in terms of like the first round.

Bennett: Right? So give us your ideas. What are the best ideas, any ones that meet the minimum criteria would move forward to the next phase of the prize. And then the next phase of the prize would come in, be something like it’s a bit more aggressive in terms of the criteria. And that was sort of a higher threshold to meet, right? So the sensitivity of your test would have to be whatever, 95%. So you’re sort of successively moving up. And so each one of those phases would probably be six to nine months and so you’re talking about the whole thing is probably going to be three to four years of time.

Mimi: That’s interesting. Going back to the first phase that you were talking about, like the health phase and then the recommendation, what is the difference between that and the tick task force that exists right now within the government-

Bennett: Tick-borne disease working group?

Mimi: Mm-hmm (affirmative).

Bennett: Yeah. So Tick-borne disease working group, I mean, I think it’s similar in terms of you’re going to be getting at certain issues in terms of the gaps and the [inaudible 00:07:40]. The idea would be that the Health Plus model is really geared towards basically the people that are actually going through the process, right? The clinicians, the patients. I don’t have the numbers in front of me, but you’re talking about 50 to 100 interviews with people and the majority of them are patients and clinicians. So I suppose that tick-borne disease working group is… The majority is government officials and other, you have like one or two patients on a committee of 14.

Mimi: The findings, are they both going to the same-

Bennett: The working group? I mean, I’m talking a little bit out of my depths in terms of the working group, but my understand is that the working group would be presenting the report to Congress. And so that is their mandate is to basically give those findings to Congress. It’s essentially, you’re still working within HHS in terms of the HHS is coordinating that, that group in that body. But this is essentially would be you sort of delivering slightly different products in terms of by the end of this. Really the idea of this is at the end of Health Plus, is going to have essentially like patient pathways. Like what does the patient actually experience as they go through the health system in the United States?

And so you’re going to have these almost like journey maps, right? So this is what happens when a certain type of patient gets in that, let’s say, just got a tick bite and has all the signs. They go through this pathway. If you come and you come a little bit later in the process, right, that you got bit two years ago and you’re just kind of figuring it out, this is the process that you would expect. And so you can start to see actually how people are being treated in the U.S. healthcare system. And then also, like I said, there’s a lot of clinicians in this group. So we’re interviewing a lot of candidates and say, “What are the problems that you guys are facing?” Because part of it is, I think it’s a big challenge to the clinician when they’re trying to conduct their work. I think it’s the hardest part is like, we don’t have really good answers for Lyme. We don’t have enough evidence. We don’t have enough studies about what happens when people come late to the process or even with multiple diseases. I don’t know if you know this, but there have actually been no studies ever with someone that treatment efficacy for anyone with a co-infection. We have actually no evidence of any person with a co-infection. So what do doctors rely on? They’re relying on their own experience and just the assumption that we make that. So I think it’s one of those situations where the clinicians, I think, are at a huge disadvantage because they don’t know the answers and so I’m forgetting the quote, but the idea of basically around it is the most challenging thing for a doctor is a patient that they don’t know what to do with. That they don’t have the answers to.

Bennett: And so we’re trying to help the clinicians do their job better as well. And so you’re going to get through these like I said, this sort of journey map understanding what the Lyme patients and the clinicians are going through. And the idea of being, again, that’s an HHS product that they can then rely on and they’ve done this with sickle cell disease. They’ve done it with, I think Indian affairs was another area that they did the Health Plus model. So, we’re probably like the fourth or fifth group that has-

Mimi: So their ultimate goal at the end, the HHS because I mean, as we all know, the government really doesn’t recognize chronic Lyme, right? So the ultimate goal would be that they would acknowledge it and hopefully eventually have a treatment and the insurance can, [crosstalk 00:10:56] wish for it all.

Bennett: Yeah. I mean, I think obviously that’s where we want to go. I mean, I think first things first. Obviously, getting a better diagnostic and I think that’s what everyone wants. And whether that’s even for acute Lyme, or that’s for when you have persistent sequelae from Lyme. You have these persistent symptoms. So whenever you come into the health system, you should be able to get an accurate test for what you have. So if you come three years late, that you’re just sort of figuring this out, you should be just as accurate a test as if you came two weeks after a tick bite. Even the acute tests aren’t great because we’re studying your immune response. I think that’s the most frustrating thing about it, is that we’re waiting for your immune response for the two-tier diagnostic test. So you get bit by tick and so you’ve got Lyme bacteria thriving through your bloodstream in the first day or two. We don’t have a good test to know if you are infected. So we’re basically waiting on a test that your immune response basically mounts over the course of two, three, four weeks. That’s not great. I would rather be attacking the bug that’s in my body rather than waiting [crosstalk 00:12:00] throughout my body and my system to start to respond to it. So there’s just a host of things that we need to do. I mean, we’re, as you know, there’s been very little innovation and really investment in Lyme disease in 30 years. So we’re 30 years behind. I think we’ve had, in the last 20 years, we’ve discovered seven new pathogens in ticks that can be transferred to us, to humans. And we have absolutely no innovations at that time, so the ticks are moving faster than us in many respects.

COVID, LYME, AND THE POLITICS SURROUNDING THE LACK OF FUNDING FOR LYME DISEASE

Mimi: I don’t know if this is a political question or not, but, or if you could answer it, but why do you think-

Bennett: Quite an intro.

Mimi: … because I’m like, I don’t know what’s politically charged anymore, not with this whole Lyme thing. So why do you think they’re acknowledging long haulers, but they don’t really acknowledge chronic Lyme patients? That’s just an interesting thing. Like the press is like acknowledging it. They know that like 10 to 20% of the people who get COVID now are having long haul symptoms. And they’re acknowledging that, they’re talking about it, they’re accepting it, but somehow they don’t accept the fact that some of us, the same thing for blind, like why do you think that is? I just find it so interesting.

Bennett: It is very interesting. I think, I mean, some of it is really timing. I think a lot of the issues with Lyme is it was a slower drip. COVID hit hard and you had so many voices yelling at once that I’m not getting better. I’m not getting better. I’m not getting better, and obviously the process, I was very focused. Everyone’s focused on. I mean, a lot of us are sitting at home just absorbing everything we can. And so you had tens of thousands, hundreds of thousands, this all happening at once. Whereas Lyme, it was slower. It was like, “Oh, you had 10 people here. You had 50 people there.” And it was over decades. Right? Not to mention, they often weren’t considered to have Lyme. You didn’t know that it was Lyme until you got this weird workaround through the medical system and like three years into it, you’re like, “Oh my God, like, I think I have chronic Lyme or persistent Lyme or PTLDS”, and so I think it’s just the-

Mimi: Timing of it. And hopefully that they’re acknowledging that it’s going to help the chronic Lyme community. Because it’s like, how can you knowledge one now and not the other, right?

Bennett: Yeah. I mean, I hope so. I hope I think, give you a nice quote here. We’d love to learn as much as we can from COVID. Right. Because I think we’re, I’m sure you’re talking to other people about this. I hope you are. Hope you have some COVID folks that you can talk to you, but because I think that there seems to be some parallels with how the immune response from COVID seems to be similar. And so what can we learn from that? And there’s a huge investment in COVID and these long haulers. So it would be great if the Lyme community could benefit that. Here’s the quote. So this is from Dr. Francis Collins. This was just a couple of days ago. He says, “28 million people in the United States have had COVID, said NHS director, Dr. Francis Collins. “If even 1% of them have chronic long-term consequences, that’s a whole lot of people. We need to find out everything we can about how to help them.”

So he’s saying even if it’s 1% of the 28 million people that got COVID, so 1% of that fast math is 280,000. Preliminary estimates of persistent Lyme people with chronic Lyme is anywhere between one and a half and 2 million people currently have non persistent or chronic Lyme. The idea being that if you have 400 and what’s a 476,000 [crosstalk 00:15:28] people get Lyme every year, and then 10 to 20% of them don’t respond, have to have treatment failure, then you’re at about 50 to 100,000 thousand people every year that are going to have these sort of persistent [inaudible 00:15:39] from Lyme. So, if you look back 20 to 30 years, add all those up, and you’re at like 2 million people. Right?

Mimi: Right.

Bennett: So if Francis Collins is saying, the director of NIH is saying that if 280,000 people was important, then I would argue that 2 million people is also important.

Mimi: Right. And if they do find some kind of treatment for them, it’s probably going to overlap for us too.

Bennett: Yeah. And the big challenge, and I think one of the things that you had first had prefaced it, that the Cohen Foundation is the largest private funder of Lyme disease research in the country. And I think it’s probably the world. We’ve been funding in all different spaces. In ecology, in vaccine, in diagnostics, in treatment, in pathogenesis, to try to just understand what the conditions are, sort of what the pathogens are doing in the body. And then also biorepositories. So that was one of the big ones that we found out early that no one had samples to do their research. So to accelerate everyone’s research, we have invested, I think we dispersed about $11 million just for the bio repositories, which are then going to be used for this challenge. This LymeX challenge has been five years in the making, essentially. We’ve been planning to do this for, or building sort of the infrastructure to be able to do this for a long time.

Tick Resource Hub

Mimi: Okay. So you have other really good resources on your website. And one of them is the tick suck resource page. So can you talk about that?

Bennett: Sure. I mean, ticks suck. That’s what [inaudible 00:17:03] tickssuck.org was our second generation of our public service announcement to get the word out really about tick exposure, what to do when you get bit. And really the idea is we just wanted to have a resource and this sort of a kid-friendly one, because I think it’s really important that families really understand the consequences of tick bites and how to prevent and then manage right after a tick bite. Not to be scared. Don’t panic. This is what you need to do. This is what you need to be looking out for. I don’t think people really understand that it’s one of the biggest threats to your family and the everyday American life. If your son or daughter, which will have the highest rates or highest risk levels… That the highest incidents rates are always between kids that are 5 and 14 years old. And I don’t know if you’ve known a lot of people that has happened to you, but if your kid gets sick and gets chronic Lyme persistent symptoms, their potential is really hit hard.

Bennett: You’re oftentimes missing years of school, they don’t get back into their normal life very easily. And these things, there’s not many other parallels, because the only risky behavior you’re taking is going outside. And you want your kids to go outside. You want to get them off their screens and doing enjoyable things. They’re not going to go out and get Hodgkin’s lymphoma when they go outside to play. This is what they’re going to be getting, these debilitating diseases that are life-threatening and life derailing in many respects. I mean, I know people now that like a really bright girl has been sick for over 10 years and she’s 27 years old in her sophomore year of college because she can only take one class a semester because it’s just so difficult for her to be able to have the strength to do it. And so just think about that. You have this potential, this trajectory that you expect for your kids, and then all of a sudden, it’s just washed away and-

Mimi: Dependent on you because they can’t live their own life anymore.

Bennett: Exactly.

Mimi: It’s terrible. So hopefully with everything that you guys are doing, because there are so many great things that people are doing out there, but it almost seems like for me, they’re coming into the world now and trying to learn what’s going on. There’s a lot of cooks in the kitchen. There’s a lot of organizations doing a lot of great things. And you wonder like, is there anyone coordinating everything like, so we’re all pulling on the same oar, or is that what this LymeX is? Like trying to coordinate everybody and-

Bennett: Yeah. I mean, again, you hit on a lot of Holy grail questions. Can someone be coordinating everything, right? And we get master control and air and everything is as efficient as possible. We talk a lot with other organizations to think through what are those areas that there may be gaps, they may be holes in or we don’t want to duplicate, right? Because it’s not efficient to be funding in the same spaces or even the same researchers. So part of my role is to just keep tabs on things and try to identify where those are. And that’s when we developed our own strategy in terms of where we want to fund and where we want to put out or if we put out a request for proposals about two years ago, around this year and a half ago, we did that.

We outlined where things were being funded, what the NIH was doing, what CDC does, what others do and try to identify those gaps like where ones being funded and where we think we could provide the biggest bang for the buck in terms of helping the Lyme community. Because, as you know, like CDC, like they oftentimes do a little bit more of the prevention type work and same thing with NIH, they focus more on that prevention vaccine, maybe a little bit into diagnostics, but they don’t really go into treatment. They do a lot of pathogenesis type of work. So we were trying to identify those areas that we might be able to help.

Mimi: Well, the fact that the NIH was willing to do this with you, LymeX, it must mean that they’re now open more to the idea that there is chronic Lyme and it is there.

LYME CONTROVERSY AND THE MEDICAL FIELDS PITTED AGAINST ONE ANOTHER

Bennett: Yeah. I mean, and then there is a significant problem, right? I think the biggest challenge and the biggest frustration that I have in many of these things is you hear about the Lyme controversy all the time, right? Where different medical communities, societies pitted against each other. The problem is that the patients are the ones that are hurt the most, right? Because typically as you know, like if you get Lyme, you have symptoms and you get treated and then you continue to have symptoms. There’s literally nothing in the guidelines to tell you how to treat you. It just basically says, try to palliate the person with pain management or other palliative things that maybe can cloud the symptoms, but it doesn’t actually cure you. There’s no clear treatment or obvious treatment. And so you’re left with nothing on one side of the community.

And then on the other side, the patients will go out into the wild west of like, “Okay, what can help me?” And they hear a doctor that says, “Hey, I’m listening to you.” And that is incredibly beneficial, right? Is that a doctor says like, “I believe you. Let me try to help.” Now, the let me try to help, you can get all kinds of stuff in there. You can get really beneficial things that can help you. You can also get people that are bad actors, that are just like taking money. It’s just so, and you get this situation where this essentially the powers that be actually created this problem. If you had better treatments and you had better diagnostics, the patients wouldn’t have to go elsewhere. It would all be self-contained. And so you can’t get mad at patients for trying to find an option so that they essentially don’t just go home and suffer.

Mimi: Right. Right. Because there’s an interesting, on the health class calls that we were on and there’s a lot of different constituents on there. There were some prominent Lyme doctors. And then there was some people from the NIH on there. And it was interesting because obviously everyone has a different opinions. And one of the doctors brought up… But like these doctors, Lyme doctors can get harmed. They get their insurance cut and they can get their medical license taken away for treating things that are not considered normal, typical practice. But then you’re like, how can you blame these… Like, you’re not giving us. It’s not like we have cancer and we’re going the alternative route because there’s chemo that we could do and we don’t want to do it. There’s no other alternative. So what do you expect people to do? You can’t get mad at people getting other alternatives when there is no other solutions that we-

Bennett: Yes. The idea like you created this alternate route when I say you like the powers that be that have larger levels of control, you created this. If you were able to provide viable solutions for the patients, none of this would have happened. So don’t blame us.

Mimi: Right. Right, right. So it’s a dream, but you know what, we’re making progress. And I really appreciate your time. This has been amazing because I do think just having this discussion and I was in awe on the call that I was on. It was like 30 or 40 people. I think you were on it. And just being on a call where they were asking all the different constituents, the doctors, the practitioners, the government, like everyone was on there and can hear it. That was really powerful. It was actually really good.

Bennett: I kind of was curious. What did you think of the process so far?

Mimi: I thought it was great. I got off the call and I started crying because it was really moving. To just be on there with other… There were a lot more people that were a lot more sick than I was on there. There was one woman who had just gotten out of a wheelchair and she’s just starting college. It was interesting seeing and hearing some doctors that were on there that I admire and look up to who were on there and just saying like, “I lost everything. Like they came and took everything because I,” was so just, and then having the government listening to that. So it was kind of great to have everybody in the room and going through that process and hopefully it gets documented so they can read it and hear it and believe it.

Bennett: Yeah. Another key thing is one of the things like I said, this is a third party doing it. So it’s a third party organization that’s running the whole research initiative. And then there’ll be pulling together their findings and presenting it to the HHS as the final deliverable. And so, that’s good because I felt the same way. I’m hopeful. But then of course we have to maintain that work and keep pushing and it can’t just be a document that they can [crosstalk 00:25:15] yeah, exactly and so, and again, there’s other things in terms of like the workshops and the other components that come out of that, but the idea is really to fundamentally shift how HHS and really the country and the medical communities see Lyme and treat those patients.

Mimi: Well, I think if more celebrities come out and say it or more people that are in the news come out and say that they have it and then I was on the line flying last week or the week before-

Bennett: Yeah. I was going to say, I was wanting to come back to that because you asked me about who was coordinating. There’s a handful of very large Lyme foundations and everyone has their own idea of what they think is the best way to go or best research or they’d like working with different organizations or universities. But it’s nice to see that the Center For Lyme Action is kind of helping facilitate some of the collective work on the federal level in terms of the advocacy. So you’re asking about coordination. That is actually one area that we are pretty coordinated as a Lyme community, more centrally.

Mimi: Well, it’s great because I think one of the asks when we were calling the congressmen and senators was, even though that that law was passed, like the Tick Hagan Act was passed, they didn’t give any money. Like they passed it but-

Bennett: It’s just sort of how it is. It’s like, I can’t remember the word. It’s like, it’s not the appropriation, it’s the authorization. And then they have to appropriate against that authorization.

Mimi: Yeah. Okay. That’s great that you pass $30 million, but you only gave three.

Bennett: Exactly.

Mimi: Where’s the rest of it?

Bennett: It’s almost like an IOU or something like that [crosstalk 00:26:45] to follow up on it in the next year. But that’s the idea, is that over the next five years that they’d be having a lot of money associated with Kagan-

Mimi: You guys gave the money, you guys gave the 25 million, but they didn’t give any, or they gave 5 million or something. It was not-

Bennett: Yeah. And well, that’s the other thing is that the 25 million is essentially, we’re looking towards the future. The idea is that it’s a partnership for the 25 million. So they’d be putting in towards that 25.

Mimi: Oh, okay.

Bennett: Exactly. So we’re still sort of having to keep pushing them to do that. And you see the other, if you look at kidney X, kidneyx.org and you can see how it would look. And so there, I think they had 25 each. So I think it was sort of 25 from the private sector, 25 government. And then yeah, go online xx.org. And you can also see a bit more information there about the project.

Mimi: Well, the good thing is, yeah, they’ve bought the product. That’s great. And then I think, like we were saying, like I found out one of the congressmen, oh yeah, it was Congressman Kevin McCarthy. So like his kids have Lyme. So I think the more that politicians are familiar with Lyme, they’re going to bring it up because I think people realize like, “Oh my gosh, this is not covered by insurance. This is not recognized.” When I caught people calling me like, “Hey, I’m blind. What do I do next?” I’m like, “Oh, you have no idea where you’re going to get yourself into.” And then I explained it to them and they’re like, “What are you talking about?” I’m like, “I’m telling you, you’re going to go and people are going to think you’re crazy. They don’t think it exists.” And they’re like, “What?” Like they just, when you tell people, they think you’re-

Bennett: Yeah, and it’s just one of the sad states of affairs where we all talk about one of the sayings in the Lyme community is like, “You don’t get it until you get it.” So you have to literally get the disease to understand how difficult it is when you have this disease. I mean, most people don’t think like, “Oh, you have to get cancer to realize how bad cancer is.” It’s like, “No, we all kind of realize how bad cancer is, but those are typically covered by insurance. There’s a [crosstalk 00:28:33] different path. We have, obviously I think a functioning health system, when it comes to cancer. Everyone is rolling in the right direction or the same direction, I should say. Whereas with Lyme, everyone’s rolling in a different direction and it seems to be away from the patients, is unfortunate.

Mimi: Yeah. Ben, this has been awesome and I thank you for everything you’re doing and for Alexander and Steven and what they’re doing for the Lyme community. So I really appreciate it.

Bennett: Sure.

You can find more about the Steven & Alexandra Cohen Foundation:

WEBSITE: https://www.steveandalex.org/

INSTAGRAM: @COHENGIVE

TWITTER: @COHENGIVE

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