Bonus Episode 37 - Thompson Center 2025 Special

Summary

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ABA Inside Track – Bonus Episode 37: Thompson Center 2025 Special

Release Date: October 29, 2025
Hosts: ABA Inside Track Team

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Episode Overview

This bonus episode of ABA Inside Track spotlights the Thompson Center’s 2025 Conference poster session—a showcase of emerging, interdisciplinary research at the intersection of behavior analysis, medicine, education, and allied health. Rather than focusing on the main program, the hosts dive into conversations with student and early-career researchers, offering listeners a glimpse into the innovative projects shaping the future of autism and neurodevelopment research. The tone is collaborative, supportive, and curious, as the hosts and presenters explore quality improvement in healthcare, person-centered planning, transition challenges, accessible technology, neuroscience, and rare disorder research.

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Key Discussions & Insights

1. Improving NICU Follow-Up Care (Farrell Landwehr)

[02:07–05:16]

• Project Focus: Enhancing comprehensive follow-up care for infants discharged from the NICU to reduce high “no-show” rates and better support families.
• Key Findings: A 23% no-show rate for NICU follow-up appointments from Jan 2023–Dec 2024. Major risk factors: young maternal age, substance use, limited awareness, and social determinants like food/housing insecurity.
• Proposed Solutions:
  • Integrating multi-disciplinary care (PT, OT, genetics, nutrition) into a single “round table” visit.
  • Active patient/family education before hospital discharge.
  • Employing care coordinators to streamline services and education.
• Memorable Quote:

  “All these visits and everything can be over the patient’s or the parents’ heads and it’s just very overwhelming.” (Farrell Landwehr, 04:39)

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2. Caregiver-Informed Inpatient Behavior Care Plans (Ellie Random)

[05:41–08:17]

• Project Focus: Designing simple, actionable behavior care plans for children with behavioral concerns during hospital stays, guided by caregivers.
• Method: Surveys completed by families inform a one-page plan covering communication, triggers, coping strategies, and supports, aimed at bedside nurses and therapists.
• Status: In early stages, seeking staff feedback before piloting at University of Missouri, Columbia.
• Host Praise: The hosts highlight patient-focused, person-first language and the plan’s real-world utility.
• Memorable Quote:

  “We put that into a one-page behavior care plan that is meant to be simple and actionable for our bedside nurses and therapists.” (Ellie Random, 06:09)

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3. Autistic Students’ Transition to Adulthood – Voices of Marginalized Communities (Atsiri Arvello Pio)

[08:18–15:39]

• Project Focus: A qualitative study exploring the lived experiences of autistic students (from marginalized, often low-income families) during the transition from high school to adulthood.
• Framework: Bronfenbrenner’s ecological systems theory, highlighting how policy-level changes (like funding cuts) indirectly—but meaningfully—affect individual outcomes.
• Methods:
  • 10–15 verbally communicative autistic young adults recently out of high school, self-identifying as marginalized and/or below income thresholds.
  • Snowball sampling through advocacy and educational programs.
  • Thematic analysis with participant “member checks” for accuracy.
• Inclusion & Empowerment: Participants guide and validate the research, moving beyond extraction to partnership.
• Notable Reflections:

  “I am using my voice to help them share their stories. It’s not just for me but it’s setting those steps for them to come behind me.” (Atsiri Arvello Pio, 14:19)

• Host Reaction: Hosts applaud participatory methods and express curiosity about IRB challenges and future results.

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4. Adaptive Gaming – Making Play Accessible for All (OT Student, pseudonym)

[16:00–25:40]

• Project Focus: Enhancing gaming accessibility for individuals with physical and developmental disabilities through OT intervention and customized hardware.
• Background: Despite accessible controllers and university gaming lounges, participant recruitment is challenging—suggesting stigma, self-sufficiency, or age-related barriers.
• Strategies for Improvement:
  • Shift toward pediatric/early intervention settings.
  • Education for OTs and families on available technology (“knowing what your potential can be and knowing your limitations are two very different things,” 21:29).
  • User-centered guidance to prevent wasted time and costs on unsuitable tech.
  • Importance of “gaming as social lubricant” for inclusion and mental health.
• Memorable Exchange:
  • Host 2: “With unlimited money I’m sure we’ll be able to provide—but that’s so important, like, what a key… Easy—I don’t want to say easy, but video games as an easy social lubricant.” (24:41)
  • OT Student: “Yes.” (24:47)
• Favorite Game Sidebar:
  • Hands-down favorite: Skyrim.
  • Looking forward to upcoming Skate release.

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5. The Amygdala, Propranolol, and Anxiety in Autism (Nanan Narayani)

[25:40–30:50]

• Project Focus: Investigating whether amygdala connectivity/volume can predict response to propranolol (a beta blocker) for anxiety in autistic young adults.
• Methodology: 16 participants (aged 16–23) assessed by clinicians for anxiety response (using clinical global impression scales) and underwent neural imaging.
• Key Results:
  • Contrary to initial hypothesis, weaker amygdala–occipital lobe connectivity correlated with better propranolol response.
  • Suggests alternative neural pathways (visual–sensory–emotional) might be more relevant than previously thought.
• Future Directions: Larger sample sizes and expanded brain region focus.
• Memorable Quote:

  “Compared to our hypothesis, the one who are responds best for this drug is the one who has weaker connectivity between amygdala and occipital lobe.” (Nanan Narayani, 28:52)

• Host Reflection: “Getting weird results… that’s part of the process. That’s why it’s science, and not just made up business gobbledygook.” (Host 2, 30:31)

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6. Translational Pipeline for Rare Neurogenetic/Neurodevelopmental Disorders (Sophia Marchetti)

[30:52–36:24]

• Project Focus: Building a “bench to bedside” translational pipeline for rare disorders—moving from genetic identification, through natural history, to animal/human cell models, and ultimately treatment discovery.
• Example Used: SYT1 Baker-Gordon Syndrome, with a comprehensive research arc:
  • Patient recruitment, clinical assessment, animal/cell models, iterative evaluation of potential therapeutics.
• Broader Value:
  • Connects patients/families with support networks and advocacy groups in addition to pursuing medical solutions.
  • Enhances sense of community and support for patients facing rare, often isolating conditions.
• Memorable Quote:

  “For a person with a rare genetic disorder… it would give them the security—no, not security, but knowledge of knowing that someone’s trying to find a treatment option for them.” (Sophia Marchetti, 34:32)

• Host Insight: Host recognizes the importance of psychosocial support, not just “the textbook example,” for rare disorder families.

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Notable Quotes & Moments

On Care Coordination and Patient Overwhelm

“All these visits… can be over the patient’s or the parents’ heads and it’s just very overwhelming.”
— Farrell Landwehr, 04:39

On Person-First Planning

“We put that into a one-page behavior care plan that is meant to be simple and actionable…”
— Ellie Random, 06:09

On Centering Lived Experience

“It’s not just for me, but it’s setting those steps for them to come behind me.”
— Atsiri Arvello Pio, 14:19

On the Role of OT in Gaming

“Knowing what your potential can be and knowing like your limitations are two very different things. Sure.”
— OT Student, 21:29

On Surprising Neuroscience Results

“Compared to our hypothesis, the one who are responds best for this drug is the one who has weaker connectivity between amygdala and occipital lobe.”
— Nanan Narayani, 28:52

On the Broader Impact of Translational Research

“…for a person with a rare genetic disorder, it would give them… knowledge of knowing that someone’s trying to find a treatment option for them.”
— Sophia Marchetti, 34:32

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Timestamps for Key Segments

• Conference Reflection & Format: [00:13–01:58]
• NICU Follow-up Care: [01:58–05:16]
• Caregiver-Informed Behavior Plans: [05:41–08:17]
• Transition to Adulthood (Autistic Youth): [08:18–15:39]
• Adaptive Gaming/OT & Technology: [16:00–25:40]
• Amygdala & Propranolol/Anxiety in Autism: [25:40–30:50]
• Translational Research for Rare Disorders: [30:52–36:24]

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Conclusion

The Thompson Center’s 2025 poster session reveals the rich, interdisciplinary work shaping the next decade of research and care in autism and neurodevelopment. Each project dives deep into “unsung” or emerging aspects of support—holistic care, lived experience, technological innovation, precision medicine, and community connection. The presenters’ passion and the hosts’ honest curiosity create a lively, hopeful exploration of what’s possible when diverse disciplines and voices contribute to ABA and autism research.

Listeners walk away with an appreciation for both the scientific “process” and the deeply human experiences at the heart of these efforts.

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Transcript

[OT Student]

Foreign.

[Host 1]

Hey everybody. Welcome to a special bonus episode of ABA Inside Track. We're back home in Massachusetts after a great trip out to St. Louis, St. Charles for the Thompson Center's 20th conference. We're very excited to be invited back. We did a great talk. Well, we did a talk.

[Host 2]

I'll let you decide if it was.

[Host 1]

Great on neurodiversity and setting goals in allyship with neurodiverse clients. And we will potentially be releasing that later in the future. Though we did want to focus in this bonus episode on one of kind of the unsung heroes of the conference, which is the poster session that happens at the end of the first day. You can listen to our preview for for October to hear us talking about some of the great talks and panels and discussions that we heard. But this episode is really just to celebrate a lot of the work that the students or postdoc students are working on. The Thompson center conference is really great because it does have these three tracks. It is a medical, educational and behavior analysis track. And I usually bounce between the education, behavior analysis track. Diana Jack usually do the behavior analysis track almost exclusively. We almost never do the medical track because we are not doctors. And I think the posters are really great place to see some work that is a little bit more interdisciplinary than many folks who are consuming ABA research are accustomed to seeing. And this year was really nice. We had a lot of talks about kind of some neuroscience, some medical models, so things a little bit beyond what we typically discuss. So we always have a lot of fun talking with folks who are presenting their posters. We hope you enjoy hearing just a sample of the the poster sessions and the presenters in their own words. Please enjoy this this sampling of the 2025 Thompson center poster session. All right.

[Host 2]

Talking with Farrell Landwehr about her poster at the Thompson Center. This is comprehensive follow up care after NICU discharge. Sounds very medical.

[Farrell Landwehr]

Yes, yes. So basically our project is kind of an observational and kind of first steps to a quality improvement project. We are trying to highlight, you know, who should be followed NICU clinic, why different risk factors for why those aren't returning to the NICU clinic, what happens there and why it is of value to the patient and the patient's family. And then we talked to neonatologists at the University hospital and got their suggestions for what might make this better. So from January 2023 to December 2024, the no show rate was 23% which is very high and it's typically high across, I mean across the country. NICU follow up rates are so we did a literature review just to see who typically is more likely to turn, those who are not likely to turn. And so younger maternal age, maternal smoking or drug use and then limited awareness of disease severity is a really important one. Also complex social determinants of health. So like food security, housing security, those all play into what they're kind of the risk factors for those who might not show up to their clinics. What we're trying to do is get the NICU follow up clinics more comprehensive so that the families can just follow up and have all their needs met in one visit. So they see pt, OT geneticists, the developmental behavioral pediatricians, things of that nature. And so a lot of the neonatologists suggested that and I know they've started to implement this at MU is just like before the families leave the nicu, sit down with them, make sure they have the patient portal, they know how to access it, everything like that.

[Host 2]

Sure.

[Farrell Landwehr]

We're trying to move towards getting like care coordinators. That way we can like incorporate everybody together, kind of get a system going to help these families and to move as a cohesive group and then better patient education about why their like loved one needs to be seen more often.

[Host 2]

Ergonomics, when you're talking about sort of like more of that like a, almost like a package of like let's get it all done in one visit to just make it less time consuming on the family. Do they have any suggestions or are you thinking is this sort of like let's go from room to room and meet with everybody or more like a round table. Let's all get together with a focus on hey you, you and your family are valuable and here's what we're all suggesting. Like where would you.

[Farrell Landwehr]

Okay, it would be more of like kind of the round table. Kind of like we're all in this together community so that PT and OT and like nutrition, everybody knows what the other record, the others, our specialists are recommending. Recommending, excuse me. And just so we can all answer the family's question at that time and that everyone's on the same kind of path, just kind of to like streamline the care and not make it as confusing for these families because all these visits and everything can get like a little bit, can be over the patient's or the parents heads and it's just very overwhelming.

[Host 2]

It's. Yeah, it's a challenging day. Anything to make going to the doctor for important things easy, low friction for families. I, I absolutely, I endorse that. That sounds great. Well, Farrell, thank you so much for your time. Really appreciate it you, Ellie Random. Thank you. So, development of a Caregiver Informed Impatient Behavior Care plan for use in inpatient healthcare settings. Those great poster titles.

[Ellie Random]

My poster is focused on the development of a Caregiver informed inpatient behavior care plan. So looking at how we support kids that have behavioral concerns when they're inpatient for a medical concern, we know that a lot of our nurses identify that they're not comfortable taking care of kids with behavioral concerns. They haven't received training on it, they don't feel safe, they don't know how to keep the child safe. So we're trying to find ways to sort distill information that will be useful for taking care of that child safely. And the way that we're doing that is by through a caregiver survey. So caregivers provide us with information about how their child communicates, what their behavioral concerns are, what their, what might trigger those behaviors and what kind of coping mechanisms might help them help support them in the hospital. And we put that into a one page behavior care plan that is meant to be simple and actionable for our bedside nurses and therapists and tactics and those types of people. And right now we're in the process of building these care plans and seeking feedback from our inpatient staff so that we can further refine them and make them more useful for our patients and for our nursing staff.

[Host 2]

Oh, okay. All right. So got the sample one here, which no one listening is able to see. But how did you, how did you sort of just come about? These are the key areas, just feedback from the nurses about the areas they wanted the most or you know, folks going to the hospital. Like, how did that come about?

[Ellie Random]

A combination of things. So both drawing from our nurses experience experiences, what kinds of issues they were running into, what information they thought would be more useful, talking to families with children with autism, especially ones that have frequent contact with the hospital and what types of things they're running into, what concerns they're having while in the hospital and sort of combining all of those things to refine it.

[Host 1]

Oh, great.

[Host 2]

So this would be, I mean, have you, it's been in use. Are you piloted a few times or you're at going to that stage next?

[Ellie Random]

Yes. Not yet. Yeah. Okay. Definitely. We would love to see these in the child's chart so they're available and ready to go when they, if they show up in the er so that the staff know how to care for them and what concerns might exist for them.

[Host 1]

Okay.

[Host 2]

I do love how I Communicate how to minute with. So I like that, you know, patient focus rather than, you know, very patiently neutral language. That was good. I don't know if that was your idea or one of the team. That was good thinking. I love, I love that for person being person focused. So do you have, so do you have hospitals that are maybe going to give this a try?

[Ellie Random]

Yeah, so we're working with University of Missouri in Columbia. Okay.

[Host 2]

Oh, it's always when you interview university, there's usually somebody who needs to learn to use that.

[OT Student]

Thank you.

[Host 2]

Appreciate you taking the time talking to me.

[Ellie Random]

Thank you.

[Host 2]

So I am talking with Siri Arvello Pio about investigating the experiences of autistic students and families during the transition from high school to adulthood. Which if you have the answers to that question, there's tons of families out there who will appreciate it. I'd love, love to hear about it.

[Atsiri Arvello Pio]

Okay. Hello, my name is Atsiri and I am from Washington State University in Pullman Washing and I am working on this project with Dr. Holly Wittenberg from the College of Education down there. So a lot of my research right now doesn't have any findings, but we will hopefully get those soon, coming in the next future months. On top of that, my research, I like to say that it's really unique because it's not article based and a lot of it's lived experience based. So that's something that I think I really like to point out a lot. When I was looking for articles, I didn't really find much about that gap of transition. And especially with low income families, as we can see that we already struggle with financial problems, being able to access those resources, our parents, caregivers, not being educated on these topics. On top of that, I've seen it firsthand with my aunt and that was really hard to watch. With that being said, we're gonna jump into our research questions and I have four research questions that focus on the challenges income families face. What support resources made the biggest difference and what barriers faced by low income families trying to access services for the child diagnosed with autism spectrum disorder. And then how can we help the families plan that transition for their student? And I'm going to be using Branford Brunner's ecological systems theory just because it's a really unique theory that's like the environment that the student is, it can affect them either negatively or positively. It just really depends. And one thing I like to point out is the ecosystem, with everything going on right now with the world, we can see that funding is getting cut by education. And it's not directly impacting the student, but it's impacting the school program that gives those services to the special education that then is going to make them stop those services and stop, stop the child, the student from receiving them, which then affects them directly.

[OT Student]

Sure.

[Atsiri Arvello Pio]

And then we have our inclusive and supportive practices that promote employment engagement for individuals with autism. So just different things that employment agencies can look into and how we can make sure that our transition programs help them and make sure that our students know those independent life skills. Then I have my participants. I'm going to do 10 or 15 participants. They have to have a diagnosis of autism. They do have to have an individualized education plan or to verify or they have to have a diagnosis just to make sure that they meet that. And then they have to have finished high school in the last three to five years. They have to participate verbally in the interview. And I don't have from severe non severe to severe just because I don't want to be that 1%. That adds to them being dismissed once again. So as long as they can participate verbally, I'm gonna go ahead and take them in. And then they have to be a member of a marginalized community and be a member of a household that receives school or public benefits. I don't have a definition for marginalized communities. I'm working with any population. As long as you fit into that criteria, I'm gonna go ahead and take you in.

[Host 2]

So, so self identified. If you're, if, if there's a sense or they're mentioning like I feel like I'm not part of the majority or it's something that would, that would. Yes, count them. Okay.

[Atsiri Arvello Pio]

Yes. And then I'll be using snowball sampling and I'll be recruiting them from Washington transition programs, advocacy groups and college based programs. And I will also be collaborating with the Disability Action center down in Moscow, Idaho. That's going to be helping me participate. And I will also be doing emails, social media flyers, I will be going around traveling to make sure that I'm getting those participants.

[OT Student]

Sure.

[Atsiri Arvello Pio]

And then I'll be doing interviews. Each parent and kids students gonna have their own and these are gonna be done via zoom teams or in person. And then I will be printing out the transcripts, removing any identifying information. And then I will develop a code book and use inductive coding in the first round to see what kind of patterns I'm seeing. Second round of coding, I will identify the themes that I'm seeing more. And I really want to take for my findings. And then I want to enhance trust ready trustworthiness in my findings by doing member checks. So I'm going to be sending it back to the participants so that they can double check and make sure everything's good.

[Host 2]

Oh, so they're included from the beginning to the end. It's their experience. Am I getting it right? Am I understand what you're hearing?

[Atsiri Arvello Pio]

All right, you're getting it correct.

[OT Student]

So great.

[Host 2]

Okay, so when you're done, the goal is going to be to have kind of this thematic analysis. These are common themes in the transition experience. Things that went well, things that didn't go well, areas of support that did better than I expected, worse than I expected, didn't exist at all. And I wish they did. That's, that's, that's going to be very helpful information to kind of continue planning that. That transition period, which is just so challenging.

[Atsiri Arvello Pio]

Yes.

[Host 2]

So, but, but you haven't done the interview, so I, I'd say so, like, what are your thoughts? But you haven't done the interview. So I guess we'll have to wait to do the thoughts till poster two or publication that comes out of this. I'm guessing.

[Atsiri Arvello Pio]

Yes. There's a lot going to come come out of this again. Yeah, they're gonna be involved within this whole entire thing with our member checks, and I'm gonna keep updating them. And there's actually a form that I have for them to have that we are gonna have, like, for them to receive like a gift card or something after this. And again, I am gonna be acknowledging them in all my work. And hopefully, if I'm able to, I will be able to have a picture of my participants with me just so I can share that. But I don't just want to, like, use them and leave them behind. But they're gonna be part of this whole thing. And again, I'm using my voice to help them share their stories. It's not just for me, but it's setting those steps for them to come behind me.

[Host 2]

I appreciate the inclusion of your participants being a part of the study. I'm curious going through like your, your university board for internal review board, how much they're going to be comfortable with the pictures being on there. But that's a good point. I've never actually thought of that. I've been on those committees before that. Good point of how do you make sure people are included in a study, but they're also the participants in a way that gives them that, you know, the empowerment of being a part of it, but they weren't the research. I don't know. That's. Now you gave me something else to think about. I didn't even get to the question.

[Host 1]

I got two.

[Host 2]

Two questions for the price of one poster.

[Atsiri Arvello Pio]

Yeah. So I. Right now I do like a PowerPoint presentation. As long as I have my cousin's approval of using their pictures, I'm able to. As long as I think, I think I did talk to my mentor about having to sign like a form and it's something that I think I will be putting in my IRB as well is that they have to sign a form to allow for photos and all that.

[OT Student]

Sure.

[Host 2]

That's good.

[Atsiri Arvello Pio]

Yeah.

[Host 2]

Well, I'm really curious to see how this all comes out. Hopefully it won't take too long to find your sample pool, be able to talk with them and get to see a summary of some of the things that you learn. Azir, thank you so much for taking the time. I appreciate it.

[Atsiri Arvello Pio]

Yeah, thank you so much.

[OT Student]

Wow.

[Host 2]

Really great. I do. I am curious. I hope you get results and either can come back, do another poster or get a publication out on this. That would be. It's so needed to hear those voices and to know what are some steps we're totally missing. I can guess, but who cares what I think. I'm not a high school new adulthood individual who's going through any transition right now.

[Atsiri Arvello Pio]

Thank you.

[Host 2]

Thank you very much. Nice to meet you. All right. We're talking with EM Burke about feasibility of adaptive gaming, a solution to gaming accessibility. And before you start talking about your poster, I gotta say that no one's gonna be able to see this because they're just listening. But a lot of the technology you brought here is a far cry from. I remember when I was a kid, we had Nintendo Power and there was a letter someone sent in about their. I think it was like a brother who had had some sort of accident and they couldn't use their arms anymore and they had to play using this big Nintendo Advantage commercially available controller with their feet and they were able to bait video games with them. But it's nice to know that you're not just expecting people to use their feet with like big old 8 bit gaming consoles. This is much more complicated, it looks like.

[OT Student]

No. Yeah. And I really think whoever designed that had to be an ot. That's right up my alley. And as a future ot, as an OT student here, that was my whole thing. Like I wanted to bridge that gap between people being able to play and not being able to Play. Video gaming is the number one leisure activity for a lot of people. It's also a very big social connection. We learned, especially during COVID unfortunately, that building those relationships virtually is very important to us. And also people with autism and other things like that, like building those relationships virtually is a lot easier than that. Face to face contact and gaming for all people is important. And then whenever you throw in especially physical disabilities, it can make make it a lot harder. So whenever consoles started developing, getting bigger, they realized that video gaming should be for everybody. So consoles started developing their own accessible controllers. PlayStation has the PlayStation Access and Nintendo has their own. So does Xbox. And then through our OT program, we also 3D print a lot of things. Different switches, different joysticks, touchpads, things like that, and different buttons as well. We wanted to provide this program education and just different information overall to the Mizzou students through the gaming lounge. The gaming lounge is already existing. We wanted to come in and help people, you know, find whatever they can to try to make their video game experience more accessible, enjoyment higher. And we wanted to see if their mental health would improve through that as well. Whenever we came in, unfortunately, we had no participants. There are open office hours. We were very well marketed and we advertised ourselves very well. We had different articles written about us. We sent out very many emails and included posts around campus and in the disability lounge and center. We kind of saw that it could be intimidating. You have a group of peers asking if you want our help. Walking into that room could be a little intimidating. And also, if you're of college age and you were born with a disability, you might already have a way of doing things that might work for you, and you might already be aware of these options. One thing that we could do in the future is maybe go into pediatrics. Think about, you know, early intervention is the best intervention for all, most things. So if we could, you know, find younger kids who wanted these options, we have a pretty awesome program called Pascal's Pals. They provide baskets and things for kiddos. And that could be a good chance to provide that option of, hey, here's an accessible controller as well. There's also different funding programs and grants out there that could provide things, but also like post acute, somebody has a life altering thing happen to them, they still want to get back to gaming, let's do this. But in the future, I would love to, you know, hold clinics and educations and teachings for other people in the program or like in the OT world and just spread the knowledge as much as I can. Because I think video gaming is so important.

[Host 2]

I. Oh, it's, it's a lot of. I don't, I don't get to do as much like, I've had to move more towards board games as I get old. So I love, you know, the being able to play video games. It's nice to see that there's still a room for video games. I think most of the games that just like the touch games, they're bad games, they're not well designed by people whose job it is to like, make good games. So being making sure that it's, it's accessible. Because I think the nice thing about an iPad game is as long as you mash the screen, you know, however you're able to match the screen, you're going to play the game. The more complex games, you might need a more complex controller. Now I know in OT that some, some of the kind of the technologies used are meant to sort of like strengthen or to make it easier to use more of. Kind of what we'd expect is sort of like the, the standard controller. But with these controllers, these are meant to be. You can just use it. Just use the controller. This is for you, use it. As long as it's the control that works for you.

[Host 1]

Correct?

[OT Student]

Yeah, 100%. And that's the cool part of like, you can get the controller, anybody can. The fact of where we come in as OTs is the ergonomics of helping you bridge gaps between like where you want to be and where you are now. So you can get this controller straight out of the box, you can use it, but that doesn't mean that your setup is going to be as effective as it could be. And that's where we want to help. We could get a whole setup with different switches, the positioning of them. Let's say you like your example. If you didn't have any arms, there are things. There's one called a sip and puff. It looks like a straw blowing in, sucking in, blowing out, sucking in. Sorry. It changes different controls. You can also get switches around your head to tilt left or right foot pedals, things like that one. Knowing that these things exist is hard. Yeah, we get trained about them. But also like finding all of these things, I had to dive deeper than just our regular OT curriculum.

[Host 1]

Yeah.

[OT Student]

But also like knowing what your potential can be and knowing like your limitations are two very different things. Sure. So going a step beyond of like this is out of the box, but I don't really know what to do with it past that. We want to make sure that everybody has that information and you can be the best gamer with your setup that you can be. And also there's a lot of things, console settings that people, like, don't know the set. Like, most consoles have accessibility settings that are, like, deep in there, which. It kind of feels a little tricky that it's so hard to find the accessibility settings.

[Host 2]

Weirdly enough, I feel like recent game. What's the last, like, complicated game. I played a PS5. I played. I played the Alan Wake remake, which is an old game, but, you know, it's not that old, I guess. And, oh, the Last of Us remake, you know, I played that one and it was like, look at all these accessibility settings. And it was almost overwhelming. It was like, congratulations, you really are thinking about every possible possible setting I could want. There are too many settings, though. I don't know if anyone's going to be able to, even if they need the setting, if they don't see the one they want. It's like, this is. It's too much for. For everybody. Even the people who probably are like, hooray, more settings. I needed these.

[OT Student]

Like, what do I do with it?

[Host 2]

Yeah.

[OT Student]

Yeah.

[Host 2]

I don't even know what some of them mean. Like, I don't even know if the language is really, like, maybe it is, you know, because they're not necessarily all going to be for. For me as the audience, but it's just some of them, I don't think, you know, or like, I've seen the term that would be used. Used by ots, but that's not the term they're using there.

[Host 1]

Is it the same thing?

[Host 2]

Is it something different? How does it change my experience? Do I have to play the game for 20 minutes to be like, oh, I hate this and turn. Like, that's a lot of extra work that you're asking people to do for settings that the goal is to be. We've made this game so much, like, easier for you to play or more. More accessible for you to play.

[OT Student]

And that's. That's so hard too, is like, we don't want people to buy these options and we don't want you to spend hours trying to sell. If it works for you. Like, we want you to. Like, we want to find something that works for you before we send you out in the world and you spend hundreds of dollars on things that you don't know works and you don't waste your time to be like, okay, I just played half the game, hated it. I'm just going to stop Playing.

[Host 2]

Yeah.

[OT Student]

And like some of the adaptability options are you skip parts of the games or like you only get you know, like a cut scene for 30 minutes because it deemed that you couldn't play it.

[Nanan Narayani]

Yeah.

[OT Student]

Like we don't want that to happen.

[Ellie Random]

Happen.

[OT Student]

So whenever we, you know, deem that something could be useful, you want to test that.

[Ellie Random]

Yeah.

[OT Student]

And that's the cool thing about like if we are part of that service, like we don't just, you know, send you out blindly. If we can figure out things that could work for you, test them and then be like, oh, actually your satisfaction went up and the effectiveness of your gaming capabilities also. That sounds like a good idea. Yeah. Let's stick with that.

[Host 2]

Yeah.

[OT Student]

Like we want to make sure that our reasoning is what is sound and then the actual outcome.

[Ellie Random]

Okay.

[OT Student]

As well.

[Ellie Random]

Yeah.

[Host 2]

I, I love your idea of starting, you know, with younger, younger children maybe as part of like check ins that might be a good places like oh, you know, my, my son or daughter, they want to go play games or they're not, you know, they, they feel left out because this is part of their dot, you know. Oh, I know someone who can come in and like do a quick, quick assessment or find that. That would be, that would just be so nice. I mean with unlimited money I'm sure we'll be able to provide. But.

[OT Student]

Right.

[Host 2]

That's so important. Like what a key. Easy. I don't want to say easy, but video games as an easy social lubricant.

[OT Student]

Yes.

[Host 2]

For, for children to get together and then today's age. Right. Okay. Well I, I can't wait to kind of keep seeing this line. I, I love the idea of more adaptive gaming. I love the idea of bringing more people into a hobby. It's a great hobby and I promise no hard questions. I'm going to ask you one though. What's the best game that's out right now?

[OT Student]

Oh my gosh.

[Host 2]

Yeah. I told you it's going be hard.

[OT Student]

Well, it's. I can tell you my favorite game of all time, okay. Hands down is Skyrim.

[Host 2]

Okay. Okay.

[OT Student]

Skyrim. OG Skyrim. The best game out right now recently. I'm really excited for Skate.

[Host 2]

Oh, the skateboarding game. Okay.

[OT Student]

Skate game that comes out. I think it's free to play like it's 26th or something. So there you go. That's, that's all right.

[Host 2]

I'm an old, old school Tony Hawk. Tony Hawk person.

[OT Student]

I don't think it's gonna be Beat Skate three. But okay.

[Host 2]

Yeah, I have heard that one is the one to play.

[Host 1]

But that's.

[OT Student]

That's the one.

[Host 2]

I might give it. I might give the demo a try.

[Ellie Random]

All right.

[Host 1]

All right.

[Host 2]

Thanks. I appreciate it. All right, so I'm speaking to Nanan Narayani about functional connectivity and volume of the amygdala as predictors of the response to propriety. Propranolol. I can't. That's a hard one for anxiety and autism. So it's a pilot study and I have a consulting psychiatrist I work with a lot in. In my job, and she's a big fan of the amygdala. I hear it all the time. I know everyone's a big fan of their amygdala to some extent. So I'm very interested to sort of see what your pilot study sort of set out to do regarding it. Regarding it in its function. In sort of the. The anxious response.

[Nanan Narayani]

Okay, so we know what autism is, so I don't think I need to explain it again. And the interesting about autism is happening 1 in 36 children in the United States, which is a big deal in for American government.

[Ellie Random]

Right.

[Nanan Narayani]

And interestingly also, anxiety occurs at higher rates in autism populations compared to general populations and other neurodevelopmental disorders. So anxiety is a very big deal in autism research.

[Ellie Random]

Right.

[Nanan Narayani]

And one of the part of the brain that kind of like responsible for anxiety is called amygdala. Before that, I would like to have some quizzes.

[Host 1]

Oh, no.

[Nanan Narayani]

So can you please guess where's the locations of amygdala?

[Host 2]

Oh, gee. Is. It's.

[OT Student]

Is it there?

[Host 2]

Am I close?

[Nanan Narayani]

Yeah, it's here.

[Host 2]

It's right there. Okay, I was close. It's been a while since I've done my neuro one class.

[Nanan Narayani]

You're fine. But. So, you know.

[Ellie Random]

Right.

[Nanan Narayani]

So there's the location of amygdala. So amygdala is actually part of the brain that's responsible for fear and emotions, which is of course related to anxiety. And we thought that because it's related to anxiety, maybe we could use amygdala as biomarkers of autism. So what we did was we did some clinical trials with propranolol to the treatment of anxiety. And we did propranolol because it has shown a potential to alleviate anxiety because it's attenuating the sympathetic response that promoting cause. What we had was 16 young adults aged 16 to 23. And we did clinical global impressions made by our clinicians. Seven is very much worse and one is very improved. And we measured their amygdala functional connectivity. What we want to do is we want to know which individuals are the best responders. We want to know the differences between the responders and non responders. But what is responders? So the responders is the one who, who have anxiety measurements score 1 or 2 very much improve or might improve after 12 weeks using propranolol.

[Host 2]

Okay. So they're on the, they're on the drug and they are reporting, you know what, feeling much better.

[Nanan Narayani]

Yes. And all of this was done by clinicians, not me because I'm not clinician, I'm a researcher. And the non responders show score have scored three to seven, which is minimal, improved to very much worse. What we found was interestingly compared to our hypothesis, the one who are responds best for this drug is the one who has weaker connectivity between amygdala and occipital lobe.

[Host 2]

So they responded better even though they had weaker connectivity.

[Nanan Narayani]

Exactly.

[Farrell Landwehr]

Exactly.

[OT Student]

Okay.

[Nanan Narayani]

Yes. It's contrary to our hypothesis because we thought maybe the one who had greater connectivity which have, we will be the best responders.

[OT Student]

Right.

[Host 2]

Because I'm under the impression that the amygdala is like the super most powerful anxious semi organ in the body. So I am a little surprised that the results were that.

[Nanan Narayani]

Yes. So, and then I found this interesting article. They showed that, that there is another pathway for emotions that goes through the occipital lobe which is called visual, sensory, emotional. So this pathway is directly goes to central limbic nuclei with this amygdala. So it's kind of like interesting. Maybe in the future we can take a look at amygdala and occipital loop instead of like it's focused on amida because it's process a lot of the emotion. So our future study, hopefully we can have like bigger data, bigger. Any more participants and we could look at occipital lobe in addition to migdalo.

[Host 2]

Okay, so, so, so what you were looking for didn't quite give you the results you were expecting. So there's more, more updates to the pipe, the next pile.

[Nanan Narayani]

Exactly. But one thing that we know for sure that, that we can use migdala for the biomarkers. Even though we still need more people to participate in our study and more brain regions to be observed.

[Host 2]

Gotcha. Okay, so there's, there's room, room to grow on everything.

[Ellie Random]

Exactly.

[Host 2]

Okay, but you know, it's not getting weird responses. That's or getting weird results. That's part of the process. That's why it's science and not just made up business gobbledygook.

[Nanan Narayani]

I suppose you are definitely right.

[OT Student]

Oh, my brain.

[Host 2]

Your brain.

[Nanan Narayani]

I'm glad it's a big brain.

[Host 2]

Good thing, too. Well, n. Thank you so much for your time. I really appreciate.

[Sophia Marchetti]

Thank you so much.

[Nanan Narayani]

Thank you.

[Host 2]

So I'm talking with Sophia Marchetti about Brin Bridging Bench to Bedside, which I appreciate in a poster a title with a colon. And then you tell me what's in the translational approaches to Rare Neurogenetic Neurodevelopmental disorders. Okay. Okay. I am. There's a lot of graphics on here, so please, Sophia, walk me through this.

[Sophia Marchetti]

Yes, I'd love to walk you through it. So I work on a really amazing team that studies rare neurogenetic and neurodevelopmental disorders. So what we have done is we've created a translational pipeline. So it goes from the identification of the rare neurogenetic or neurodevelopmental disorder, enrolls them participants into a natural history history study and then builds out models. So Mouse models, IPSCs, fly models, and then molecular studies to hopefully find a treatment option for these patients. As we know, rare diseases are not studied as it's becoming a lot more popular now, which is really exciting. But hopefully this pipeline can be built upon and put in these rare diseases to find treatment options.

[Ellie Random]

Okay. Okay.

[Host 2]

So could you give me an example? Because some of those terms, I'm a little more familiar with some of them I'm like, digging deep to undergrad classes on biology. Like, what would it. What would it kind of look like in practice? So, hey, I've got a rare disorder. It's in a book. Someone found it in a dusty old tome, but we don't know what to do with it. What would kind of how would it. How would it look?

[Ellie Random]

Of course.

[Sophia Marchetti]

So that's a great question. So we're starting out our to transitional pipeline with SYT1 Baker Gordon syndrome. So this was a newly discovered disorder in 2019, 2018. So very new. We are building out a natural history study. So we enroll patients into that, and from there they complete clinically meaningful assessments and finding those end points for therapeutic treatment. Then using that information, we can build these mouse models, models, the fly models, and the ipsc. So the stem cells and look for those, like, see if they correlate with the natural history study, and then plug those therapeutic treatments into that.

[Host 1]

Okay.

[Sophia Marchetti]

If that makes sense a little bit.

[Host 2]

The human IPSC model, that's like computer modeling using. Or that is model.

[Sophia Marchetti]

So that is a skin biopsy.

[Host 2]

Okay.

[Sophia Marchetti]

And then we build the stem cells out in a dish.

[Ellie Random]

Ah.

[Host 1]

All right.

[Host 2]

Okay, so. So it is.

[Sophia Marchetti]

So it's a model.

[Host 2]

Actual like wet work stuff. Like you're looking at something.

[OT Student]

All right.

[Sophia Marchetti]

Yes.

[Host 1]

Yeah.

[Sophia Marchetti]

Okay, so all the bench tube beds.

[Host 2]

Oh, my. Good. Okay, so this is something where there's a lot of both the assessments and then there's a lot of like lab, Direct lab work looking at. Okay. Cells.

[Sophia Marchetti]

Yeah, it's very much a translation, translational model. So that's what makes it different and really cool. I know there's a lot of translational things going on, but it really highlights a lot of important steps to go through.

[OT Student]

Okay.

[Sophia Marchetti]

Finding treatment options.

[Host 2]

Now I understand how science works. It's a process. It's iterative. We build on things. Sometimes there's funding, sometimes there's not. Fits and starts, technology. If I were just hearing, hey, there's this, there's this translational approach I heard about, and if I did not have a background in science, I were not at a conference where people are talking about medical models.

[Ellie Random]

Bottles.

[Host 2]

What does any of this matter? Like, what's the long term plan of once this is perfected?

[Ellie Random]

Yeah.

[Host 2]

What does it mean for, you know, just a person? Just anyone?

[Sophia Marchetti]

For anyone. It would.

[Host 2]

With a, with a rare condition, certainly.

[Sophia Marchetti]

For a person with a rare genetic disorder, it really would mean a lot to them because it would give them the security and earn. Not security, but, but knowledge of knowing that someone's trying to find a treatment option for them. So being able to go through this and connect with people who also have the same disorder as you, because these are rare genetic disorders, so finding those families and being able to connect with other people who have that same thing, that is so important for these people and for these patients. So being able to like expand these studies and connect them is really the broader implications.

[Host 2]

And I, I appreciate. I didn't even think about the idea of like patient advocacy or a patient, like socialization around these issues. I usually see medical models. I'm like, you're going to find a cure, you're going to find the textbook example.

[Ellie Random]

So that's.

[Host 1]

Wow, that.

[Host 2]

Was that always part of the model or that sort of was like something that naturally occurred during the initial pilots.

[Ellie Random]

Yeah, that's.

[Sophia Marchetti]

That was something that we were like, oh, that'd be really cool to incorporate. But being able to, to work with. So we work with the Baker Gordon Syndrome foundation and like being able to say to patients, oh, you can go to them and connect with them. It's really meaningful for the parents, caregivers and patients to be able to do that.

[Host 2]

I would get I would guess it must be very frustrating if you are dealing with the ramifications of having a rare genetic disorder tablet. No one's ever heard of it. Like that's not. Okay. That might be good for you, Doctor, telling me this or you're going to publish something, but not for me, the person who's dealing with, you know, whatever the complications this may be. So having that collaboration, different groups. Excellent.

[Ellie Random]

Yeah.

[Host 2]

Well, I am I don't know if I understand all the nitty I certainly don't understand all the nitty gritty of most of the models in here, but I do appreciate your explaining the overall pipeline, the plan goals. Thank you so much, Sophia.

[OT Student]

Of course.

[Ellie Random]

Yeah.

[Sophia Marchetti]

It was nice to meet you.