[00:00:03] I'm Effie Parks. Welcome to Once Upon A Gene, the podcast. This is a place I created for us to connect and share the stories of our not-so-typical lives. Raising kids who are born with rare genetic syndromes and other types of disabilities can feel pretty isolating. What I know for sure is that when we can hear the triumphs and challenges from others who get it, we can find a lot more laughter, a lot more hope, and feel a lot less alone.

[00:00:31] I believe there are some magical healing powers that can happen for all of us through sharing our stories, and I'll take all the help I can get.

[00:00:43] Once Upon A Gene is proud to be part of Bloodstream Media. Living in a family affected by rare and chronic illness can be isolating, and sometimes the best medicine is connecting to the voices of people who share your experience.

[00:00:56] This is why Bloodstream Media produces podcasts, blogs, and other forms of content for patients, families, and clinicians impacted by rare and chronic diseases. Visit bloodstreammedia.com to learn more.

[00:01:09] Hello. Welcome to the show. This is Once Upon A Gene, and I'm your host, Effie Parks, and I'm so glad that you're here. Thank you so much for joining me.

[00:01:17] If you are new, welcome. There is a beautiful library of conversations and resources and a lot of magical wisdom in this podcast, so I hope you find what you're looking for.

[00:01:29] If you have any questions, know that you can always contact me through my website or on social media, or if you want to hear a specific topic that hasn't necessarily been covered, please let me know.

[00:01:39] Okay, a couple things of housekeeping before we get into the episode. Number one, the revival. Okay, it's coming up January 25th. Go get registered. It's a three-hour amazing event. It's at 12 p.m. Eastern Standard Time. Head to effieparks.com slash events to get all the details and to sign up. I really, really hope to see you there. It's going to be so fun.

[00:02:01] I'll continue to send out the agenda and updates about the event as we get even closer to you. So please make sure you follow me on social media. Next point. Okay, this is coming out before New Year. So this is the second annual Once Upon A Gene Therapy Walk Day. Okay? So on December 31st, we're celebrating. Yes. And we're going to be together. And it's the perfect opportunity to connect with your local community. So reach out to the friends nearby. Meet up and enjoy.

[00:02:31] Enjoy a simple walk together. Don't forget to tag me with a photo on social media to share your experience. I can't wait to see it. Last year, we literally had, I mean, people all over the world from here to Australia to Switzerland. It was so beautiful and fun. And if you're walking solo, that's totally okay too. Good for you. This day is all about just carving out a moment of self-care. Again, building your community, embracing healthy habits as we step into the new year.

[00:03:01] Even if it's just one day early. Even if it's just one day early. It matters. So let's make it special again together. Again, just follow me for updates, but plan your walk on New Year's Eve. Okay? Any time of the day. 8 a.m., 10 a.m. in the evening, whatever. I can't wait to see you there. So my episode today is so wonderful and I'm so glad to share this with you.

[00:03:21] Today, we're talking about a groundbreaking initiative that has the potential to reshape rare disease research for kids like mine and yours. I'm talking to a pediatric neurosurgeon with an incredible passion for advancing science in ways that directly impact families navigating rare diseases.

[00:03:39] He spent four years setting up a biorepository at MUSC to collect and preserve CNS samples for his pediatric patients.

[00:03:48] And these are not just samples. They are materials that would have otherwise been thrown in the garbage.

[00:03:54] They can now be transformed into invaluable resources for accelerating research and therapeutics.

[00:04:00] Shout out to Combine Brain for being that magical biorepository and helping to make this come to life.

[00:04:06] So in this episode, we're talking about his journey through neurosurgery and setting up the biorepository and his vision and our vision and a definite goal how this work can expand to other institutions.

[00:04:20] So we have a lot to discuss. So buckle up. I know you're going to enjoy this conversation. It's so inspiring and informative.

[00:04:28] Please enjoy my conversation with Dr. Ramin Eskandari.

[00:04:33] Good morning, Ramin. Welcome to the podcast.

[00:04:36] Good morning, Effie. Thanks for having me.

[00:04:38] Yes, it is my absolute pleasure. I've heard so much about you.

[00:04:42] I know you saw your very first CTNB1 patient, Savannah, our wonderful president, Emily's daughter, and then your name has just spread from there.

[00:04:51] So I'm really honored to have you on the show today.

[00:04:53] Well, thank you so much. Yeah, wonderful family.

[00:04:55] And it was quite the surprise hearing back about where this would end up going.

[00:05:00] And I've been pleasantly surprised ever since.

[00:05:02] Well, it's very cool. You've been doing the work, which we'll get into.

[00:05:05] Can you give me a brief introduction of yourself?

[00:05:08] Absolutely. So I was born on a Thursday. No, just kidding.

[00:05:11] I am at the Medical University of South Carolina.

[00:05:15] I'm a pediatric neurosurgeon here.

[00:05:17] I've been here since 2014.

[00:05:20] I did most of my training elsewhere.

[00:05:24] And I started in Michigan, grew up in Ann Arbor, Michigan, did medical school in Wayne State, Detroit, and then went to Salt Lake City, Utah for my neurosurgery residency.

[00:05:36] And then that followed by a year of pediatric neurosurgery fellowship at Stanford.

[00:05:41] And I came here right after training.

[00:05:43] So I've been here since that point.

[00:05:45] And for the last six, seven years, I've been division chief of pediatric neurosurgery.

[00:05:52] And we have been doing research here at MUSC and pediatric neurosurgery neurosciences around different kind of brain injuries and specifically around hydrocephalus and CSF disorders ever since I got here.

[00:06:06] So also around 10 years of that.

[00:06:09] Wow, that's so impressive.

[00:06:11] Do you miss your cold winters from your youth?

[00:06:14] Is that why you're in South Carolina?

[00:06:16] So I actually grew up playing hockey and I do miss the winters.

[00:06:20] But thankfully now we have the means to go to the winters instead of having the winters come to us.

[00:06:26] So I will take that.

[00:06:28] I don't miss the drab and the lack of sun.

[00:06:31] That was really challenging to deal with.

[00:06:34] But I do enjoy a nice snowfall.

[00:06:38] Yeah, me too.

[00:06:39] Well, really, that is so impressive.

[00:06:40] And congratulations.

[00:06:41] What made you go into pediatric neurosurgery?

[00:06:44] That story is rather interesting.

[00:06:46] It's I'll do the quicker version.

[00:06:48] It really falls on my seventh grade science teacher.

[00:06:51] So I decided I was going to do pediatric neurosurgery when I was about 12.

[00:06:56] And that's because my seventh grade science teacher brought in some sheep's brains for us to dissect one day.

[00:07:02] And back then this was, I think, 89, something like that.

[00:07:07] There wasn't this whole PowerPoint and all this high, you know, fancy equipment for showing presentations.

[00:07:13] It was very much a non-realistic sort of fanciful demonstration of how the brain works with electrical activity going everywhere.

[00:07:21] And after we dissected the brain, she showed us this presentation and said, you know, that thing you just dissected controls this entire animal.

[00:07:30] And then showed us a video of a sheep being born and how it grows up quickly.

[00:07:35] And then it does all these things that sheep do.

[00:07:39] And it blew me away.

[00:07:40] I just said, how could this tiny little thing control this entire animal?

[00:07:45] And so I remember going to her after class and saying, this was so cool.

[00:07:51] Can people do this for a living?

[00:07:53] And she said, you mean dissect brains?

[00:07:54] I said, no, no, no, no.

[00:07:56] Work on brains in humans.

[00:07:58] And she said, yeah, it's called neurosurgery.

[00:08:00] And I said, well, can you do it in kids?

[00:08:01] Because I always wanted to work with kids ever since I was much, much younger.

[00:08:05] And she said, yeah, it's called pediatric neurosurgery.

[00:08:08] And I said, OK, well, then that's what I'll do.

[00:08:10] Obviously, not knowing anything about what I was getting myself into.

[00:08:14] But I think after I started growing up and realized what it actually meant to work in a hospital and what a surgeon is and what they do.

[00:08:25] And as I gained more information, it became even more obvious to me that that's really what I wanted to do.

[00:08:32] And so every step of the way, it became more and more clear that this definitely was the right decision.

[00:08:38] And ultimately, at the end, yeah, here I am.

[00:08:41] That is the raddest origin story ever as a seventh grade little boy.

[00:08:46] And I love that she had to double check if she was going to be answering to a future serial killer or maybe to a future neurosurgery.

[00:08:55] No, that's super cool.

[00:08:56] I don't think we were dissecting stuff in seventh grade yet.

[00:08:58] So I know that you said you worked a lot on like brain injuries and stuff, but how specifically has it shaped you to work with pediatric patients who have rare neurodevelopmental disorders?

[00:09:09] So my initial research interests when I first got started in medicine, actually my very first job, I kid around with my residents and students nowadays that I've been doing research longer than I've been in training or school because my very first day of college, I went to the lab first at 7, 730 before my first class started at 8.

[00:09:33] So technically, I went to the lab before I even started college.

[00:09:37] And that's always been a part of my life ever since then.

[00:09:40] There wasn't really a moment beyond sort of getting various educational transitions going that I was not involved in research.

[00:09:49] And all that research was always involving pediatric neurological disorders.

[00:09:54] So in the beginning, it was around babies that were born to moms that had drug abuse problems.

[00:10:00] And then it was how did those kids grow up and do they become dependent on substances?

[00:10:06] And then it transitioned over to conditions involving cerebral spinal fluid or CSF problems such as hydrocephalus, where there's a buildup of that fluid within the brain.

[00:10:17] A lot of those kids do have various rare neurological disorders and genetic conditions that go along with it or either make them more at risk of developing it or it just is a known part of their disease and disorder.

[00:10:32] And so we see them as just part of a routine screening.

[00:10:34] The brain injury part involves a ton of patients, unfortunately, who are extremely fragile and they're born premature.

[00:10:41] And so those patients also can have some neurological known genetic and neurological diseases and disorders because that might be the reason why they're born premature, because that condition has a predilection for prematurity.

[00:10:56] So I feel like throughout most of my clinical and research exposures, having patients with various rare neurological diseases has just been part of it because they end up finding ways into the neurosurgeon's office or in the hospital where we have to get involved in their care.

[00:11:15] Let's talk about this project for people who don't necessarily know yet what a biorepository is, the project that you're working on, and maybe some biggest learnings from it,

[00:11:25] biggest hurdles, what types of samples are you collecting.

[00:11:28] Tell us about that project that you set up kind of on your own.

[00:11:32] Will?

[00:11:33] Absolutely.

[00:11:33] Well, I will say that none of this would have happened without a massive, massive amount of support and never die, don't give up kind of attitude because it was a huge lift on the whole team's part.

[00:11:47] So a biorepository is a collection of biological tissues or samples from patients that you can collect and then you can keep it for purposes that can be involved in research and clinical trials and genetic testing and all kinds of therapeutic evaluations.

[00:12:09] So, you know, new therapeutics that come around or the development of new therapeutics a lot of times depend on these biorepositories to be able to do the testing instead of testing them in humans.

[00:12:22] So there are human tissues and human samples, but then you don't have to put anyone at risk.

[00:12:25] And the impetus behind this came many, many years ago when we realized, specifically I realized for myself, that when we do surgery, any surgeon does surgery,

[00:12:39] there's a lot of normal or otherwise healthy tissue that we have to either go through to get to the pathology, to get to the thing that we want to get rid of or to fix.

[00:12:51] For example, in a patient with a brain tumor, sometimes, most of the time, the brain tumor is not just sitting on the surface of the brain waiting for you to just sort of pluck it out.

[00:12:59] You have to go into the brain to get it out.

[00:13:02] And obviously we are trained to do that as minimally invasively or with as little tissue damage as possible.

[00:13:10] But there are definitely parts of the brain where you can physically remove it and there's no consequence to the patient.

[00:13:15] And you have to do that in order to get whatever it is out that you want to get.

[00:13:20] And so what I realized is that there's a lot of tissue that gets kind of thrown in the trash, so to speak, because when we remove parts of the brain or we go through the brain or the spine or anything,

[00:13:32] first of all, you have to go through the scalp and then the bone of the skull or spine.

[00:13:37] And then you have to open the covering of the brain and you release fluid.

[00:13:41] And then you're going through the brain itself.

[00:13:43] All of this is just to get to the end point.

[00:13:46] And all of this is tissue that is very valuable because it's otherwise normal.

[00:13:52] And when I started really doing some deep dives into what are the biggest bottlenecks for therapeutic development and for advancing research endeavors, especially rare disorders, a lot of these things, they're just not enough tissue.

[00:14:07] There's not enough normal samples.

[00:14:09] There's not enough patients.

[00:14:11] And so saving this kind of tissue becomes extremely important.

[00:14:16] And that's when we started going down the route of, all right, well, we now know that we can do this.

[00:14:21] As surgeons, we have a rare opportunity to have access to this kind of stuff.

[00:14:27] Nobody else in medicine has this opportunity.

[00:14:30] And so we should be taking advantage of it instead of just letting it go into the suction canister at the end of the surgery day and go into the biohazard bin.

[00:14:40] That process took a little more than four years to get approval.

[00:14:44] It was a lot of back and forths with our institutional review board and our ethics committee, which all of this is appropriate.

[00:14:52] You know, this is a very sensitive topic.

[00:14:55] But at the end of the day, you know, when we started to show them why we want to do this, you know, what kinds of patients we're getting this from, we're not doing anything to them we wouldn't otherwise be doing.

[00:15:08] It literally is just recycling their quote unquote trash that we would otherwise be throwing away.

[00:15:14] And so once that got very well documented and we sort of hashed out all the details, then it was a very quick movement from just getting one small amount of spinal fluid, let's say, from a patient who we're already having a surgery where we're releasing that spinal fluid to now being able to collect.

[00:15:36] At this point right now, we are able to collect anything and everything from every patient that we we operate on, which has been huge.

[00:15:46] And our repository has really grown quickly because of that.

[00:15:51] And at this point, we're still only one surgeon.

[00:15:54] So it's just me still doing this.

[00:15:56] But we have interest from multiple other surgeons and not only neurosurgeons, but even I have colleagues in the adult world that do.

[00:16:06] Gut surgery and trauma surgery.

[00:16:09] And if you think about those patients and how how often they come into the operating room, that's a lot of potential tissue that could be saved.

[00:16:20] It's kind of mind blowing that you're the only one doing this.

[00:16:23] And thank you to you and your team for having sort of this passion of maybe something that was perhaps keeping you up at night.

[00:16:29] In both ways, I can see that four years is like a glacial pace.

[00:16:33] But also knowing about like the bureaucracy of everything in the medical world, that seems pretty quick.

[00:16:38] So what an awesome lift, as you say, from you and all of your all of your colleagues that helped get this going.

[00:16:44] It is so important.

[00:16:46] And I wonder what are some of the biggest lessons that you've learned that you could perhaps coach other institutions?

[00:16:52] Like you said that maybe you're going to help other surgeons realize that this is something they could and should do.

[00:16:58] So I wonder what are some of the steps maybe you could skip next time or some of the learnings that you can pass off that might make this move quicker for the next person who decides to do it?

[00:17:06] I think the most important part in this is to make sure you, number one, have the space.

[00:17:14] Because again, this very quickly can overwhelm a system that isn't prepared to manage all the samples.

[00:17:23] And to make sure that you have a dedicated biorepository coordinator that can physically come, collect and be flexible.

[00:17:33] Because surgeons are notorious for not wanting to alter their workflow.

[00:17:39] You could call us stubborn.

[00:17:40] I guess that's reasonable.

[00:17:42] But, you know, part of that workflow is how we ensure quality because we do things similarly each time.

[00:17:48] And so you don't forget steps and you make sure that things go smoothly.

[00:17:51] But this disrupts that a little bit, right?

[00:17:54] So making sure that you have buy-in from people that are going to be involved in this.

[00:18:00] So the operating room nurses and the OR circulators, the people who run around and get what you need or what patients need or what the anesthesiologist need.

[00:18:09] You know, everybody needs something all the time in an operating room.

[00:18:12] And so there are people designated to do those sorts of things.

[00:18:16] And so getting them involved early, making sure you're setting expectations, making sure you, again, you create a workflow that works not only for yourself, but also for the various people involved.

[00:18:28] And so having all these people within the system buy-in takes time.

[00:18:34] But I think if you can show them what their time and their effort is going towards, it makes it so much easier to sell them on this.

[00:18:43] And then making sure that you have people that can continue to do checks and balances and that you have a, you know, for us, having the combined brain folks be interested and really helping us out by housing the repository at their facility has just made it incredibly nice.

[00:19:04] Because they're pros at this.

[00:19:06] They've been doing this.

[00:19:07] This is their world.

[00:19:08] Even though they've never had brain and spinal fluid and CNS tissue, everything else about it is the same.

[00:19:15] And so having pros that do this and can do it probably way better than we could, once we combined our brains, sorry for the pun, we really allowed the decompression of our lab and our coordinator to really make a much, much more concerted effort to get the tissue over to them.

[00:19:36] And all this allowed us to now think about incorporating more surgeons because we never would have been able to do this.

[00:19:42] Or we'd never be able to move forward if it was just us doing it the whole time.

[00:19:48] Wow.

[00:19:48] I mean, the stars really aligned there.

[00:19:50] And I think it's meant to be.

[00:19:52] At the top of the show, I mentioned that you performed a surgery on our president, Emily's daughter, Savannah.

[00:19:57] So one of the things that shows up in many CTNNB1 children is a tethered cord.

[00:20:02] And you collected some cerebrospinal fluid from Savannah.

[00:20:06] And obviously, she connected you to your brain afterwards.

[00:20:09] So I wonder, since science and tech is progressing so rapidly, I know that you only need a very small amount of that CSF fluid or a small amount of biofluid like blood for experiments.

[00:20:20] So can you give me an idea of the volume that you actually collect during procedures?

[00:20:25] And then what can you do with it?

[00:20:28] Sure.

[00:20:29] So the volume of, and I'd have to, I don't remember if we actually collected from her or if afterward she approached combined brain to say, could we?

[00:20:42] You'd have to ask Emily on that one.

[00:20:43] But I will say that for those specific surgeries, you'd be amazed at how much fluid already comes out when you do the surgery.

[00:20:52] You know, when you do these types of surgeries where you're operating in the spinal canal, in order to do anything with the nerves or the area of tethering, you physically open up the dura, which is the covering of the spinal canal.

[00:21:07] It also covers the brain.

[00:21:09] It's like a leathery sack that the brain and spine sit in.

[00:21:13] And when you do that, when you open that sack, it's full of fluid because the nerves of the spinal cord and the brain, everything kind of sits in that fluid and is floating in that fluid.

[00:21:23] And when you open that, I mean, we've gotten up to 25, 30 milliliters of fluid and you only need microliters of fluid to do various experiments.

[00:21:34] Microliters?

[00:21:35] Microliters is all you really need.

[00:21:37] And so we're collecting, you know, 100 times more than what would be needed.

[00:21:42] But again, the idea is that if you have it and you'd otherwise throw it away, why not keep it?

[00:21:50] And so what it does is it allows us to be able to collect a good amount of fluid.

[00:21:56] We save some of it for our own experiments because we do have various experiments with different disease processes that are ongoing.

[00:22:03] And the biorepository keeps the rest of it.

[00:22:06] And so these are all aliquoted.

[00:22:09] This is what having a biorepository coordinator that is very responsive does for you is that it allows you to be able to collect from any and all of the patients that you consent and you discuss this with.

[00:22:21] And so some surgeries don't have a lot of fluid to collect because they're not, you know, it's not the same exact surgery.

[00:22:28] It's either a smaller patient or just a different surgery where not as much fluid is released because it might be a brain surgery where you're not in a very large space of fluid.

[00:22:39] Other surgeries, there's so much fluid that we can really only collect up to a certain amount or else we'd sit there and give our coordinator, you know, 10 different huge vials of CSF.

[00:22:50] And she'd be spinning down and aliquoting CSF for eight hours instead of doing other work.

[00:22:55] So we tend to limit it to about 15 to 20 cc's, so milliliters, for any one patient.

[00:23:02] But the lowest amount we've ever gotten was only, I think, two milliliters.

[00:23:07] So that's still significantly more than the 250 or 500 microliters.

[00:23:13] It's five to six times that much that you'd need to do any singular experiment.

[00:23:18] So we're always getting way more than what we'd need to actually run an experiment.

[00:23:25] Wow.

[00:23:26] Unfortunately, about a week ago, we had a CTNB1 kid go do their tethered spine surgery.

[00:23:32] And they had thought that it was planned to collect some CSF to have the surgeon do that.

[00:23:37] And in the end, the surgeon decided against doing that.

[00:23:40] And that is frustrating.

[00:23:42] And I don't know the answer to why.

[00:23:44] But if these are things that are otherwise going to be thrown in the trash, and it's going to drastically change the landscape for rare disease research and hopefully accelerate the development of rare disease therapeutics for kids like Ford,

[00:23:55] Ford, if you were a parent and your kid was having a surgical procedure, what do you recommend is the best strategy for the clinical or surgical team to save these samples?

[00:24:06] And what is the script as parents that we can use to convince or persuade our clinical team to do this?

[00:24:13] That's a great question.

[00:24:14] So, you know, I would like to think that any surgeon would jump at the opportunity to help advance research and therapeutics and sort of add and contribute to the biorepository.

[00:24:27] It is not completely easy to do.

[00:24:30] First of all, you have to have an IRB.

[00:24:33] So you have to have a dedicated, approved protocol to be able to even do that.

[00:24:39] You know, even if you're throwing it away, it still has to be fully vetted and have to have approval through your system.

[00:24:46] There are ways of doing that expedited and sort of quickly, but there's no way you're going to be able to do it on the day of.

[00:24:54] And so these would have to be centers that already have an approved IRB for collecting spinal fluid in some other way, shape or form.

[00:25:03] So if they've already got it for other diseases, you could potentially have that surgeon or that clinician or the researcher send an addendum to include this as a one-off.

[00:25:14] So that's one way to do it.

[00:25:15] If you don't have anything in place at your institution, then you really don't have an option to collect that fluid, even if your surgeon wanted to do it.

[00:25:25] So, you know, during that four years where we were back and forth with our IRB, we were not able to collect any fluid.

[00:25:33] And so for four years, I mean, every surgery I did, a part of me died because I just kept thinking, man, if only we had this approval today, I could be collecting this patient's fluid or this patient's brain specimen.

[00:25:47] And it's not the reality.

[00:25:49] You know, the reality of our system is that these kind of things have a very, very heavy vetting process to go through.

[00:25:55] I think for good reason.

[00:25:58] I do think that hopefully as more institutions become savvy with this and we hope to make this, at least our process, our IRB available for other institutions where they could just copy and paste into their system.

[00:26:12] And there'll be slight differences institution to institution.

[00:26:16] But the overall meat of the and the heavy lifting we already did.

[00:26:19] And so nobody else needs to do that.

[00:26:21] We would love to make this more available to people to be able to do this at their institution.

[00:26:25] But you do need to have that in place.

[00:26:27] You can't just sort of ask for it on the day of.

[00:26:29] So how do we expand the work that you've already straightened out at MUSC?

[00:26:34] Like what would be the first step to get other neurosurgeons and clinicians to build on your process?

[00:26:39] You know, I think you sort of need a champion at each institution.

[00:26:42] You need to have someone that's willing to put in some effort.

[00:26:46] It won't be the same effort that we had to do, thankfully, but it will need some effort.

[00:26:51] You do have to consent patients.

[00:26:53] And so you need to have that worked out.

[00:26:55] You need to have a repository coordinator at your institution.

[00:26:59] Someone's got to collect the CSF or whatever tissue you're collecting and process it.

[00:27:04] The time to processing is important.

[00:27:07] The lab in which you're processing it is important.

[00:27:10] You have to make sure they know what they're doing.

[00:27:11] The protocol of how to do it is not challenging,

[00:27:14] but you need to have someone that's got basic science lab skills and is willing to do it.

[00:27:20] You also have to have someone that's coming to the operating room and collecting it.

[00:27:23] So, you know, that surgery that you planned for 1230 may be delayed by two hours because some other surgery right before you is taking longer.

[00:27:32] And so you have to have people that are flexible.

[00:27:35] I think ultimately what will probably end up happening, which is my prediction,

[00:27:41] is that we will have a few different institutions who already do something similar.

[00:27:46] And so getting them on board is not such a heavy lift.

[00:27:50] And they've got people, like I said, they've got the other pieces in place already.

[00:27:54] We're just adding another layer or another opportunity to their already existing platform.

[00:28:02] And so convincing them to do it is not hard.

[00:28:04] They've got the leadership to do it.

[00:28:06] They've got the skill set and the coordinators and the physical manpower.

[00:28:10] But then we help provide them with the landscape of, all right, this is how we laid out the quest to get it approved.

[00:28:17] And this is how we consent to patients and so on and so forth.

[00:28:20] So I think if anyone out there, you know, ends up their child or their family members at an institution that would like to collaborate with us,

[00:28:30] we are 100 percent open to that.

[00:28:32] We'd love the opportunity to make this, again, not just a singular surgeon, not only a singular department, but hopefully not just a singular institution.

[00:28:41] We'd love to have this multi-institution.

[00:28:43] Yeah.

[00:28:44] So we need to get Ramin on all the podcasts and all the stages and maybe make a documentary so we give some of these neurosurgeons a little FOMO that they could be doing something rad.

[00:28:53] So I know as patient advocacy orgs, we've had, all of us probably have had really frustrating experiences working with academics in terms of data sharing and resource sharing like these types of samples.

[00:29:06] So what is different about MUSC on your own department that allows them to share these samples with the patient communities and foundations as easily as you did with combined brain?

[00:29:16] And how do you think we can get other medical centers to start sharing these resources as well?

[00:29:19] I mean, I would say, honestly, the combined brain folks have just made it so easy.

[00:29:25] We are still an academic institution and there's still a lot of red tape around certain kinds of things.

[00:29:31] But just working with the combined brain folks has allowed us to be able to do this because on their end, they've already done this sort of thing with different institutions, with different industry.

[00:29:42] You know, they've got the history and accreditation and the reputation that makes it so easy for an institution to say yes.

[00:29:53] And so I feel like they're well poised to be able to receive and involve and engage with multiple institutions when it comes to specifically CNS tissue and spinal fluid.

[00:30:08] I think that's the one thing they didn't have in there, really didn't have at least any kind of in any volume and any substantial amount prior to engaging with us.

[00:30:18] And that's what we have been able to provide for them.

[00:30:20] So, again, it becomes, you know, much more of a win-win than any lopsided relationship.

[00:30:27] Yeah. And for any patient advocacy org leaders out there who is not yet familiar with combined brain, go back to episode 217 where I interview one of the founders, Terry B. O. Bichelle, and get lit up.

[00:30:39] Because shout out to combined brain.

[00:30:40] Thank you for all your work in helping to change the world.

[00:30:43] And I love hearing about these partnerships.

[00:30:44] And I love hearing about how there's just so much less red tape when people have such an aligned mission of just knowing that we have to work faster and that we can work faster.

[00:30:55] So it's very cool.

[00:30:57] You're doing a million things, Ramin.

[00:30:59] So I wonder, like, it's more than a full-time job and you have several academic and clinical appointments.

[00:31:05] How are you so infused?

[00:31:08] Like, how do you have all this energy?

[00:31:09] Are you OK?

[00:31:10] Are you taking care of yourself?

[00:31:11] How are you doing all of this and maybe what is it about you that's really giving you this energy and drive?

[00:31:18] I mean, I don't think I'm that much different than others in the field.

[00:31:22] I think we all have, you know, maybe a sense of pathology around our inability to say no.

[00:31:31] I know a lot of my colleagues are the same way.

[00:31:33] They're doing their own multiple superhero things that I just all at.

[00:31:38] You know, the thing that's always been really important to me is the team around which I engage.

[00:31:45] And so being enthused really is based on when you get up in the morning or week after week or year after year, are you excited about the people with whom you get to work?

[00:31:57] And that team involves patients, too, right?

[00:32:01] A huge part of what we do involves direct patient encounters and families.

[00:32:06] And in my line of work, pediatrics specifically, you know, it's not always the patient if they're too little, but their families.

[00:32:14] And fortunately, even though we have a lot of really challenging diagnoses and bad things can happen, kids just tend to do well.

[00:32:23] They pull through.

[00:32:23] If you can get them the right treatments and you do the right things and you give them a chance, they tend to pull through.

[00:32:29] And I think seeing those types of things happen on a frequent basis gives you the energy and whatever drive you need to continue to do what you do.

[00:32:40] And I'm fortunate to be around some amazing people that continuously push the envelope when it comes to innovation and sort of out of the box thinking and are very open.

[00:32:53] You know, when you come with a new idea and something super crazy and you tell them the reasons and they look at you and say, yeah, let's do it.

[00:33:01] You know, that's amazing, right?

[00:33:02] That's driving innovation forward.

[00:33:04] That's allowing you the next time you come up with an idea to not squash it before it even gets to the surface of your brain because you've been just told no too many times.

[00:33:14] So I think those are the biggest driving forces for me personally.

[00:33:19] Well, I think your humble answer is really what answered that question.

[00:33:22] Definitely not a stereotypical personality trait of each kind of doctor there, Ravine.

[00:33:27] No, that's really beautiful.

[00:33:28] And that means a lot to hear as a parent.

[00:33:31] So thank you for that.

[00:33:32] I just have one last question and it's the most important question of the interview.

[00:33:37] And it comes from our friend Anna Fouser at Combined Brain.

[00:33:40] And she really wants to know how you go through life without bacon and ice cream.

[00:33:47] Oh, I had a feeling it was going to come down to the diet and the nutrition at some point if it was a question from Anna.

[00:33:54] It's a really important question.

[00:33:55] I saw this question and I was like, my breath was taken away because really?

[00:34:00] Bacon?

[00:34:00] I'll preface this by saying that until November of 2019, so the November before COVID hit, I was the biggest carnivore I knew.

[00:34:10] I mean, I could pack away some animal product.

[00:34:14] I also was and still am extremely into cooking and love the whole process.

[00:34:24] If I ate steak, for example, I rarely cooked it.

[00:34:28] I would basically kind of char it on the outside.

[00:34:31] They called it black and blue.

[00:34:32] I don't know what you guys call it over there up on the other side of the world.

[00:34:36] But we, you know, from my standpoint, it was just never a meal without meat.

[00:34:41] And over time, I just became a lot more aware of, number one, the environmental impact of animal product consumption in the world, not just the U.S., but the world.

[00:34:51] And also the health benefits.

[00:34:53] And it just became more and more clear to me that I got to take this seriously.

[00:34:56] And I've always been healthy.

[00:34:57] I was never, I never ate things that were extremely unhealthy or pizza every day or anything like that.

[00:35:04] But a huge part of my diet was animal products.

[00:35:07] And so as I learned more about it, I just sort of decided, honestly, it was a long time coming, but it was a decision that was made very much abruptly on a weekend right before Thanksgiving.

[00:35:18] And I always make Thanksgiving dinner.

[00:35:20] And so I decided, OK, I'm just going to give it a try.

[00:35:23] And so I went cold turkey, no pun intended, and made Thanksgiving dinner normal, just like every year.

[00:35:30] And the only piece of turkey I ate was maybe the size of a tiny shred just to make sure it was salted correctly.

[00:35:37] And I did pure vegan for about three months.

[00:35:41] And it was a lot less challenging than I thought it would be.

[00:35:46] But I also did not know what I was doing.

[00:35:48] I was not in a good nutritional place.

[00:35:51] So I had to rethink how I did this and had to get reeducated on how to get the right amount of protein.

[00:35:58] And once I did that, I actually ended up losing a lot of weight because I didn't generally eat a ton of carbs to begin with.

[00:36:03] And so most people will just substitute their meat for carbs and they end up gaining weight.

[00:36:08] I got back to my steady weight.

[00:36:10] And now my protein intake is on par, if not slightly more than what it was when I was eating meat.

[00:36:17] But it's so much more diverse.

[00:36:19] And so I will say I'm not religious about it as far as being, I wouldn't call myself vegan by any means.

[00:36:25] Because I'll still have like a piece of pizza here or there with family or friends.

[00:36:31] Or if I'm, for example, I just came back from a trip to South Africa on a global surgery endeavor where we're trying to engage different hospitals for doing exchange programs with our trainees.

[00:36:42] And we went to a place that is very well known for certain types of fish and these game animals that they hunt because they're overpopulated in an area.

[00:36:54] And so, you know, that sort of a trip, I'm not going to say no.

[00:36:58] I'm not going to have an entire meal of it, but I'll definitely try everything.

[00:37:03] And so I tend to call myself plant-based and I find there's probably good ice creams out there that weren't even around five years ago.

[00:37:11] And I would put this out there to say I can take Anna to a place and have ice cream that she would, it would blow her mind that it's not, you know, milk based.

[00:37:21] So I think there's a lot of options out there.

[00:37:25] What's unfortunate, though, I will say with this whole thing is that most of these non-animal based or plant-based options are still way too expensive.

[00:37:33] And so I'm hoping over time that these more healthy options become more and more accessible for the general population because trying to eat a purely plant-based diet is not a cheap endeavor.

[00:37:49] And so it really, unfortunately, self-selects for people who have a little bit more financial security.

[00:37:55] And that's not okay.

[00:37:56] We shouldn't, in a society where our goal is to improve health, we shouldn't preclude people from getting it who probably need it most.

[00:38:05] And so that's, I guess that's my little soapbox on it.

[00:38:07] But I'm not a, I'm not a hundred percent one way or the other.

[00:38:10] I think balance, balance is always good.

[00:38:12] Well, I have a feeling Anna's pretty competitive, so I bet she will accept that challenge.

[00:38:16] And your rare puns is about the steak and the turkey.

[00:38:20] It's all that saved you from being an absolute monster and taking Thanksgiving away from everyone that day.

[00:38:24] Oh my gosh.

[00:38:26] Anyways, Ramin, it was such a pleasure to meet you and speak with you.

[00:38:29] And I know this conversation is going to get in the ears of so many, so many people who need to hear it.

[00:38:36] And especially some neurosurgeons and some academia.

[00:38:40] I just, I can't wait for everyone to meet you.

[00:38:42] And thank you for the important work that you're doing.

[00:38:44] And thank you for being so open-minded and especially for being so personable and human to the families who come into your clinic.

[00:38:52] So thanks for being my guest.

[00:38:54] Absolutely.

[00:38:55] It was an absolute pleasure.

[00:38:56] Thank you for having me.

[00:38:58] I hope you've been enjoying this podcast.

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[00:39:28] I appreciate you all so much.

[00:39:30] I don't know what kind of day you're having, but if you need a little pick-me-up, Ford's got you.

[00:39:34] I don't know what kind of day you're having.

[00:39:36] I don't know what kind of day you're having, but if you need a little bit of time, I don't know what kind of day you're having.

[00:39:40] I don't know what kind of day you're having.