Some of you are, thank you for all coming this year to the 2024 Dr. Molnar Lectureship and presentations. I've got a few announcements that we make here for the Academy. First of all, I'm trying to read up here, turn off all your cell phones if you've never heard that one before. I think you can probably guess some of the other announcements coming here. Please complete your evaluation forms also, you can find those on the mobile app. And of course, visit the PM&R Pavilion for all the fun down there and live interactive resources, education. Make sure you pick up your nice PM&R shirt. A few people still have to pick that up, but be careful. Don't go too crazy in it, but they're nice shirts. And then there's the code of conduct up here. We have to kind of follow the rules and no bad jokes. Keep everything clean. You can save some of the stuff for after hours and things. And let you know that everything's being recorded up here, all right, 100%. And please, if you're going to ask questions, we want a lot of questions, a lot of interaction. Please come up to the microphone so everybody can hear, especially myself. And feel free to ask plenty of questions, comments, whatever you'd like. So with that in mind, we'll just begin with our 2024 presentations here. Dr. Molnar, I spent at least a decade or more with her, wonderful lady, we call her the grandmother of pediatric rehabilitation in many ways. And Dr. Nelson will speak more about that later today and such. I have no financial disclosures. The talk today or the presentation today is really threefold. The first is the winner of the Foundation of PM&R Dr. Molnar Rehabilitation Medicine Research Grant from two years prior, so that would be our 2022 winner. We want to thank the Foundation for this award that allows at least a $10,000 grant in research in the field of pediatric rehabilitation medicine. We also want to donate to the Dr. Molnar Fund if possible. We do have some estates now that have been dedicated, a six-figure or more, to the fund. And consider that in the future also. It's our money for our field and for our research. In addition, we want to donate to the Journal of Pediatric Rehabilitation Medicine. Also the two links are basically linked together and funded together, you just need to distinguish one or the other in the comment box if you go on the Foundation website. This electorship today, at least the grant electorship, allows for a national presentation for generally one of our fellows or novel researchers to come forward for their first encounter or earlier in their career presented in front of a national audience. We're very thankful for it. The Foundation enjoys it because they get to see their outcomes two years later from the money that they've funded for the research grant. The second part will be the Jacob Neufeld 2024 Article of the Year from the Journal of Pediatric Rehabilitation Medicine. Jacob, a dear friend of myself and all of us, or many of us here, has passed and helping us from above, I'm sure. And then finally we'll finish with the keynote electorship, the Dr. Molnar electorship, this year, Dr. Maureen Nelson from Texas Children's. She won the award last year and we give this person, colleague, one year to prepare for their PowerPoint or their presentation. The focus of the electorship is comments, guidance, learned lessons into the future, the older generation passing on valuable tips or thoughts or comments anyways to younger colleagues that move forward. That's what today's about. We appreciate you all coming and we'll go ahead and move on to our first discussion, your presentation, and please come on up. Thank you. I have Kimberly Hartman going to introduce our first speaker. Thanks, Kim. I appreciate it. All right. Good morning, everybody. I have the pleasure of introducing our first speaker, the 2022 Gabriella Molnar Pediatric PM&R Research Grant Award recipient, Dr. Christina Sarmiento. Dr. Sarmiento is currently an assistant professor in the Department of PM&R with a secondary appointment in the Department of Pediatrics at the University of Colorado. She completed her undergraduate training degree at Ohio State University followed by medical school at the University of Michigan. She then moved to Colorado for a combined pediatrics and PM&R residency program and subsequently completed a subspecialist clinical outcomes research fellowship. She's currently a scholar in the Colorado Clinical and Translational Sciences Institute Clinical Faculty Scholars Program and completing the Clinical Science Graduate Program. She has a very impressive and extensive resume, including awards such as the Top 10 Free Paper Award at AACPDM for the past two years, as well as numerous national presentations and publications primarily focusing on the care of and transition of care of young adults with childhood onset disabilities. So it's my honor to present Dr. Sarmiento and her talk, Growing Pains, Understanding the Transition of Care Needs of Adolescents and Young Adults with Cerebral Palsy in a Pediatric Rehabilitation Medicine Clinic. Thank you so much. Hi everyone. Thanks so much for letting me speak today. So I'm going to talk about the project that I did that was funded by the Dr. Molnar Research Grant. So as a little bit of background, as we all know, life expectancy for individuals with cerebral palsy is increasing. And the greatest gains have been made for those with more severe CP. And so now over 90% of children with CP are reaching adulthood. We also know that adults with CP have unique healthcare needs and risks. This includes higher prevalence of many cardiovascular, metabolic, respiratory, and psychological chronic conditions. And at earlier ages than the general population. So there really is a need for comprehensive adult-based care. Therefore we need a transition from pediatric to adult-based healthcare in an age and developmentally appropriate manner. But how? So our studies sought to understand the values of young adults with CP and their families regarding pediatric rehabilitation-related care. And the perceived barriers and potential facilitators to transition into adult care. And our ultimate goal is to develop a patient and family-centered transition process for youth with CP in our pediatric rehab medicine clinic. And help bridge this gap. So we conducted a qualitative study using semi-structured interviews. For those of you who are not familiar, semi-structured interviews are a method within qualitative data collection that allow you to adhere to an interview guide while still being able to ask off-the-guide questions, follow up on participant ideas and perspectives. So they allow nice flexibility while still allowing you to compare across interviews. Participants in our study were eligible if they were an individual with CP and or their caregiver, were at least 18 years old, had been seen in our pediatric rehab clinic at least once in the preceding two years and had not yet transitioned to adult rehab care and were English-speaking. We recruited participants using purposeful sampling, which is a sampling technique used in qualitative research to seek out information-rich cases that vary from each other. And when needed, we used a shared decision-making process with the adult with CP and their caregiver to ensure that patients who wanted to participate could and that they were able to consent to participate. And then we also offered the option for either individual or dyadic interviews. We analyzed our qualitative data using team-based inductive coding, so letting our data elements emerge from the interview transcripts themselves. And we used a phenomenological approach to exploring lived experience, so letting participant experiences really guide our analysis. And then we primarily used traditional thematic analysis to identify our salient themes. So far from this data, we have two manuscripts. Today, I'll focus on this first one, which is our overall experiences of young adults with CP in pediatric care transitioning to adult care, which was published in Developmental Medicine and Child Neurology. So these are demographics of adults with CP who either participated or were represented by their caregiver, so there are 20 of them. So the mean age was 24 years and 4 months, although we did have a range from 18 to 40 years. Adults with CP were majority male, as well as non-ambulatory. We were able to recruit participants living in rural zip codes in Colorado. And about 45% had Medicaid as their primary insurance. And then almost all of them, 90%, were living with their primary caregiver at the time of the study. In terms of caregivers who participated, so we had 19 total caregivers that were family caregivers. One was a court-appointed legal guardian, and so their data are not included here. But so caregivers were majority female. And we were able to recruit several participants that were bilingual and fluent in languages other than English, which is something we sought to do since we conducted all interviews in English. The majority had at least some college experience and were employed at least part-time. A lot of these caregivers were employed through Colorado's parent-caregiver, paid parent-caregiver programs. The majority were from high-income homes, and we identified four major themes. So they're all displayed here. I'm going to dive into each of them a little bit more deeply, so I won't read them to you here. Our first theme was focused on the value and security of long-term relationships. So many participants emphasized the value of feeling in really close and personal relationships with their pediatric rehab providers, as I'm sure rings true for a lot of people here. And so several described their providers as good friends or even family. And participants shared that this personal relationship was critical to their comfort and engagement of the youth with CP as well as the family. And having this personal longitudinal connection was really important to them and very hard to give up. The fear and uncertainty regarding transition was really palpable in these interviews. It was really scary for participants to start over with new providers who might not get it. So this one participant shared a quote that really, really resonates with this theme. So the uncertainty makes a whole other layer of stress. There's the stress about the fact of something, and then there's the stress about not knowing how it's going to work out, right? There's this whole extra layer of just fear. It's just fear. And so there was fear of the actual transition itself, but then also fear of just not knowing what that's going to look like. And that was very powerful. Our second theme was this feeling rudderless navigating the logistics of transition. So a lot of participants felt like they lacked the needed information to successfully transition to adult-based care, and were surprised and overwhelmed by the number of changes that occurred at this transition to adulthood, beyond just the medical. They cited numerous logistical challenges that they felt really lost with. So identifying appropriate providers and facilities, geography. So where are these clinics located, and how was that transportation for the families? A lot of these adult clinics had really long wait lists, and they had communication challenges of trying to get in and get scheduled with them. And they faced caps on Medicaid patients too, which made establishing with an adult-based facility as challenging. So this participant told us, not only do we feel rudderless, we don't have any information. I don't know, we feel we're sort of like shooting in the dark. Our third theme focused on the differences in the pediatric versus adult models of care. So many participants felt that adult care systems were unable to meet the needs of complex patients like them, or their adult child, compared to the pediatric health care system. And they really were daunted by the task of recreating their dream team, which had taken them years, or sometimes even decades, to establish within the pediatric health care system. And several participants were unsure where they best fit. You know, some were seeing that maybe the pediatric setting was no longer the best fit for them or their adult child, but also didn't feel like the adult health care system was adequately meeting or supporting their needs. So this participant told us, I think that there are some adults that their bodies and stuff aren't quite the typical adult bodies. And so that's what, it's like, where do we fit? Because adult doctors also didn't train to be treating somebody whose body is like this patient. And so that's what's really scary to me. And finally, this final theme focused on the perceived lack of provider expertise and comfort in adult care. And so some participants, while they had not yet transitioned their rehab care, had either attempted to or transitioned some of their other specialty care. And so several recalled really challenging encounters in the adult health care system, recalling a deer-in-the-headlights look, or an adult provider that told the parent, I don't know what you want me to do. However, some participants were kind of excited by the idea about seeing an adult provider who had this adult CP knowledge and expertise and could kind of walk them through this next phase of life. And several participants identified medical training as a way to potentially improve this. As this participant told us, as people like my child are living longer, and as you all are going through your med school training and learning more about people like my child with multidisciplined areas of medical need, you will be able to more help people like her and not have the deer-in-the-headlights look when we walk through the door. We'll see less and less of that. That's the hope. So of course, this study has limitations. So it is qualitative and it has a single-center design. And so the single-center design might limit transferability to similar settings. Additionally, caregivers that participated were majority female and employed and college educated, and adults with CP were majority non-ambulatory. And all this, again, may limit transferability to other settings. Additionally, although we offered options for adults with CP and caregivers to interview separately or together, adults with CP in this study preferred to be interviewed with their caregivers. And so no adult with CP was either able to or chose to participate alone in an interview. And so, you know, our findings may have been different if we had been able to conduct all those interviews separately. And finally, you know, we wanted to focus on young adults who had not yet transitioned away from pediatric rehab care. And so the perspectives and experiences of people who have completed that transition may differ from these more anticipatory concerns. So to conclude, I probably don't have to tell you that the transition is a stressful and emotionally charged period. And even those who haven't yet transitioned describe and anticipate many different barriers. And so we really do need to support, educate, and partner with adult providers, including our adult PM&R providers, to help feel comfortable and supported in caring for these patients. And we can incorporate some of these participant-identified facilitators into our transition processes to ensure that we're developing patient and family-centered transition programs and better supporting these transitions. So our next steps after this study, so we formed a stakeholder advisory panel that consists of adults with CP, caregivers, as well as multidisciplinary clinicians from both pediatric and adult healthcare settings. And we're incorporating the identified facilitators and barriers from this study into the co-creation of our transition process for youth with CP in our pediatric setting. And so the good and the bad, you know, we're incorporating and learning from all of it to create our program. And then we also conducted a follow-up study to address that final limitation that I talked about where we then interviewed adults with CP and caregivers who had completed the transition to adult-based care to learn about their experiences kind of from the other side of that bridge. And so I really would love to thank the Foundation for Physical Medicine and Rehabilitation who supported this work. This was my first grant-funded research study, and so it really has supported me and helped take my career exactly where I'm hoping it's heading. And so I really appreciate the support of early career investigators and physicians through this grant, so I'm so appreciative. Here are QR codes to the manuscripts for both of these articles. I didn't even get to talk about the second one, which focuses on caregiver role. We had so many, so much important and rich information from our caregivers about all the ways that they're supporting their young adult children, and we felt like that deserved and warranted its entire own manuscript. So feel free to take a look at either of those if you have a few minutes. A wonderful work, Christina. thank you very much. Thank you, Chris. We have a few minutes for questions here for Christina. Anybody want to come to the mic? In the meantime, Christina, a couple that I have for you. How do we get our adult PM and our colleagues to help us out more? It's been my message for three decades to try to get our adult PM and our colleagues more involved. We've had knowledge and now learning courses on the AAPMNR website and portals. It seems like they're all wonderful colleagues, but they like to put needles in people and go into pain medicine and other things. I have sent a number of adults with CP to the pain clinics for injections, epidural steroid injections, other things. But that's been a problem. Any suggestions on how we can get them more involved? That's a great and important challenge. So the probably not super generalizable solution that we had at Colorado is we started an adult CP clinic in our adult health care system where I'm the provider in it. So I am very fortunate I get to transition the adults to myself. But when I do need to refer them to another PM and our colleague, I find that even just a little communication goes a long way. And so if I even just take the two minutes to send an epic in-basket message of, hey, I'm sending this person with back pain. They have CP. I'm on top of that, but I really have this specific question for you, I find that they feel better supported in answering that specific question that they have the expertise for. The other fortunate thing I found is that a lot of our adult PMNR residents at the University of Colorado are gaining interest in seeing and caring for adults with childhood onset disabilities. And so I try to encourage and bring them into this clinic as much as possible and say, you have the skills to do this. You learn spasticity management. You learn orthotic and equipment prescription. And yes, there are unique aspects of CP care, but you can be completely qualified and competent and comfortable. Comfort is really the biggest thing in seeing these patients. So I try to show them a little bit of how much fun it is. Wonderful, thank you. Josh, go ahead. Josh Alexander from University of North Carolina. First of all, it's great to see someone who has their heart, their mind, and their expertise all aligned in the same area. So you're only going to do more good work from here. So congrats on that. I'm curious, the information that you've gleaned from the research you've done so far, if you had unlimited dollars to spend, but really only a three-year time frame in which to spend them, what kind of interventions would you try to use to help address some of the issues that you found? That's great. I think a lot of the barriers that we encountered, especially if we have unlimited funds, would be well-supported by a dedicated transition coordinator that either has nurse manager or care coordination expertise. All the logistical challenges, the forming connections with adult care facilities and clinics and providers, and being that point person for families would be so helpful. And I think that's the biggest challenge is that requires ongoing funding, and there's not a great structure in place for that now. There's attempts to make some of this care coordination between visits reimbursable, but they're certainly not perfect and certainly not at the level to sustain a transition care coordinator for every single clinic and every single institution. But if I had unlimited funds, I would say that, having that go-to person. Thank you so much. Thank you. Wonderful job, Christina. Thank you. I'm a bit military-like, so we want to keep on time. Elaine, I think you're up for our next one, Journal of Pediatric Rehabilitation Medicine, if you want to come up. And thank you. Thank you. We just have one more comment. Can we hear from Rita? Rita, please. Go ahead. Yeah. No, I just wanted to say, one thought I have had. At our institution, we're blessed at the University of Michigan. We started about, I think, in 2012, grooming one of our adult PM&R residents towards adult CP. And now have three people with Dr. Hurwitz, Heidi Hapala, and Mary Schmidt. And one of the comments I have about pulling in people involved in pain medicine into CP is when we think of our patients with CP and scoliosis and having spinal instrumentation that goes down to the pelvis, well, then where are they going to move? They're going to move at the SI joints. And then managing pain and perhaps pulling them for consideration of SI joint injections and kind of gradually drawing them in into this population. So just a thought to be considered. Thank you, Rita. Thanks, Rita. So hi, everyone. How are you this morning? I hope everyone had a good night's sleep. And it's good to talk with everyone. I'm editor-in-chief of the journal in our field, the Journal of Pediatric Rehabilitation Medicine. And today, we are going to let you know who won, what article won, the third Jacob A. Newfield Award. So this is our third year that we've been doing this. And Jacob passed away on September 29, 1997. His death was influenced by moral injury. And just like Dr. Glockenflecken yesterday, his mother stepped up to the plate, right? He had the heart attack and his mother, he could do surgery after he had the heart attack and he was released from the ICU. But he couldn't drive for six months. So his mother took him back and forth to work and provide a little snack when she picked him up. And when Jay passed away, the journal was a little bit in disarray. And we had articles with maybe one word sentences and things like that. And Jay's mom said, this is not going to go out with the Newfield name. And she stepped up to the plate and she helped copy edit all those articles that were in the pipelines. And iOS Press said that that was our publisher. We're now bought by Sage. But they said they had never seen a journal be on track for the next publication after they lost an editor-in-chief. And we were. Usually, they said it took a year. So we were able to stay on publishing schedule. So Janet Newfield, the mom, she kept us on track. And the journal will go into its 18th year of publication in January. And I've been with the journal for seven years and I want to give a shout out for Sarah Tinsley, our wonderful managing editor, who's one of the most brilliant people and just very fun to work with. And she's, if Sarah, if you want to stand up. She's here with us today. So today we have two delightful, intelligent, wonderful people that have been working with the journal. We have a robust resident and fellows program. And I'm going to tell you a little bit about C.L.N. Nova. So Nova Ho is a second year pediatric rehab fellow graduating in June of 2025 from Northwestern University, Shirley Ryan Ability Lab. She completed resident from Rutgers NJMS, Kessler Rehabilitation Institute. She has been involved with JPRM as a fellow trainee since 2023. And she has contributed to our visual abstracts, presented in our inaugural Speed Journal Club, and has participated in the peer review mentorship program. She's actively looking for employment in pediatric rehabilitation and is available for hire. And then we have C.L.N. Nemo. She's currently an attending physician and assistant professor in the PM&R department at the University of Nebraska Medical Center and Children's Nebraska. Originally from Kansas City, Missouri, she completed her PM&R residency at UNMC, followed by a Pediatric Rehabilitation Medicine Fellowship at the University of Michigan. She assisted Kayla Williams, and we'll give a shout out for Kayla. Kayla was our first fellow and she really established the program and just did an incredible job and she's still working with the journal and she started our visual abstracts. No, actually Sruti Padipati Thomas started our visual abstracts and Kayla took over on that. Now Sruti is one of our special guest editors for the Cerebral Palsy Special Edition. Okay, so where was I? Yeah, and so I'm still talking about C.L.N. I do that. She assisted Kayla Williams with creating visual abstracts, performed mentored peer reviews, participated in the Speed Journal Club, and presented the Jacob A. Newfield Award at AAPM&R last year. And with further ado, I'm gonna turn over the microphone to C.L.N. Nova. Thank you. Thank you. We have no financial disclosures. So, Elaine, did you? Oh, sorry, thank you. We wanna talk a little bit about the Journal of Pediatric Rehabilitation Medicine. So for those who were able to come to our peds day, we already kind of went over some of this information, but for those who weren't able to, we just wanted to share. Our journal really focuses on a multidisciplinary collaborative effort with the priority being our pediatric rehabilitation medicine goals. But we do work with neurosurgery, urology, orthopedics, all different kinds of people are contributing to our journal. As we mentioned before, it was founded in 2008 and our current editor-in-chief is Elaine. I wanted to make a shout out about how broad our author contributors are. And in fact, we've been having growing numbers of contributors overall. And our percentage of authors from North America is about 55% with a substantial population of our authorship coming from Europe and also Asia. So really just growing an international audience as well as contributors to our journal. So these are the most read articles between 2023 and 2024 for the journal. They have a wide variety of topics and different article types included in different issues. These are the top five cited articles, again, between the years 2023 and 2024. And then these are the top five articles of all time. So the Jacob A. Newfield Award was started in 2022 in honor of the founding editor-in-chief, Jacob A. Newfield. It's involvement with the JPRM Residence and Fellows Program where a fellow or former fellow in my case will present. And the criteria for selection include importance to the field, relevance to the clinical practice, technical quality, writing quality, and then there's bonus points for being involved in pediatric rehab medicine. For eligibility criteria, the article must have been published in JPRM within the last four issues. So in this case, between November of 2023 and October of 2024, at least one author or co-author must have been a physician and the article must be an original research article. Some of our past winners of the award. So our first winner was some of our authors who looked at Botox treatment, and suitable palsy for upper and lower limb spasticity. In 2023, our winner looked at the return to school processes for children with acquired brain injury. And now we'll get to who our candidates were for the 2024 award. We have a few runner-ups. Our first special mention is our third runner-up. Some of our colleagues out in Gillette and Minnesota did a paper looking at ankle proprioception in children with cerebral palsy. Just to briefly review some of the highlights of the article. So they created a custom-built device to measure the ankle proprioception of children and look to see what the ability of children who had cerebral palsy versus age-matched, typically developing children was to have that ankle proprioception sense. And maybe not surprising to us, but they were able to do it in an objective measure is to show that children with CP have impaired ankle proprioception. Our second runner-up was looking at the causes of death among people with myelomeningocele. It was a multi-institutional, which covered 16 different institutions. And I believe several people in this room or their institutions collaborated in this study. Some of which, just to quickly review, would include like Riley Children's, Boston Children's, Texas Children's, Lurie's, Mayo, Alabama, CHOP, Southwestern, Nationwide. There's contributions from Oklahoma City, Alberta, Canada. So really just trying to cover a lot of North America, really great multi-institutional study looking at leading causes of death in people who were born after 1972. And in total, there were 283 deaths. Some highlights of the results include that 53% of that study population made it into adulthood before passing away. And they looked at causes of death for people by various breakdowns, some of which included people who were shunted. Leading causes of death included neurologic and pulmonary disease, with neurologic the highest being related to infections of shunt. And then for unshunted individuals, the leading causes of death were often pulmonary and then cardiovascular. And this is in contrast to historical thoughts and advances in medicine where a leading cause of death previously was urological. And they were only finding about like 10% of urological causes of death in this population. And our number one runner up, or our second place, is a paper based out of Columbia by some of our colleagues possibly also in this room, looking at the sexual experiences and challenges of people with cerebral palsy. This study was an online survey. They had 40 respondents. And really just bridging a topic that we don't often talk about, but we should be talking about more, about how adults with cerebral palsy aged 18 and up are experiencing sex, whether they're sexually active, whether they are having partners, and what that conversation has been like in terms of education for them, as well as their experiences. So also a highly recommended paper done by our colleagues. All right, so now the winner. Drumroll, sorry. Okay. All right, so the article that was chosen as the winner was Motor Function Outcomes in Children with Open Prenatal Repair Spina Bifida Apartha at 36 Month Follow-Up, the Zurich Cohort by Brittany Braun et al. So the aim of the study was to describe motor function outcomes focused on ambulation among children at age 36 months after prenatal repair of spina bifida. This was a prospective cohort study looking at 87 patients that were born between 2010 and 2018. Of note, this was primarily a European study, so the majority of patients were from Switzerland and Germany. They assessed neonatal anatomic level and motor function at 36 months, motor function level, ambulation status, and the use of orthotics or assistive devices for ambulation. These are two figure and a table. I'm not sure if you can see them very well, but the figure one there is looking at functional level. On the x-axis is the level of function, so T12 to S1, and then there's an unknown category. And then on the y-axis is the percentage of children. So as you can see, with the lower levels, so lower lumbar or sacral, they had a higher percentage of people that were ambulating with or without orthotics or assistive devices. And then in table two, they were just looking at demographic variables of ambulation at 36 months. So they noted that individuals that had CSF diversion or shunting had poorer association with ambulation. And then again, kind of as we would expect, those with lower levels, lower lumbar or sacral levels, had higher levels of ambulation at 36 months. So they found that there was favorable ambulation status at 36-month follow-up in 86% of individuals, which they noted was comparable to the MOMS trial with 71% of those children walking at 30 months. And then similarly, another finding was that the anatomic lesion level on the neonatal MRI, neonatal motor function level, and then the motor function level at the 36-month follow-up were all associated with ambulation status. And our colleagues who wrote this paper were unable to be here today to accept this award. So we have a video of one of the authors. Hi, everyone. I'm Beth Patton. I'm the co-director of the Zurich Center for Spina Bifida and one of the senior consultants in the Pediatric Rehab Department at the University Children's Hospital in Zurich, Switzerland. Thank you so much for recognizing the work that we are doing. This paper that we are discussing was a dissertation from Dr. Brittany Bruhn, so I'm especially proud of her and it was also an honor to work and get to know her. At our center, the coming Monday will be the 228th open fetal surgery repair for myelomeningocele or myelokesis. So we are continuing our work and we are very dedicated to the clinical care and research and reporting on the outcome of these children. We continue to collect a lot of data and we're trying hard in addition to our clinical responsibilities to work on getting our research results and outcome results out as much as possible. I hope you all have a great time at this conference. I would love to be there sometime with you. And to everybody who has already supported at Peds Rehab Day, thank you very much, but our journal is in look in search of donors. Any donation amount, no matter how big or small, would be very helpful and it makes these awards as well as keeping these articles open to access available for everybody in our field. So if you scan this QR code, it will directly lead you to a donation page and if you put in the comments JPRM, it will go towards JPRM specifically. And in case you have any questions, this is still the same QR code for donations, but Elaine Pico or Sarah Tinsley have their contact information where you can make sure that donation went through. Thank you both very much. Thank you all. We're going to pass on further questions for the moment here to keep on time. And our next person to the colleague of the stage here, Dr. Moberg, will introduce our Dr. Molnar-Lechter here for 2024. Last year, Maureen Nelson was honored with the Molnar-Sawford Lifetime Achievement Award for her outstanding contributions to the pediatric rehab community. For the younger crowd here who don't know her yet, please come up and meet her later today. We are here as a PEDS community in large part because of her leadership. Maureen has held positions at many institutions. She's gone from Wilmington, Delaware, to Houston, to Charlotte, to Austin. I might have missed a few, but now she's in San Antonio. And at each stop, she did everything from inpatient rehab, to clinic, to procedures, botulinum toxins, to the management of baclofen pumps. But she's especially known for her special expertise in brachial plexus cases and pediatric EMG. She's written hundreds of articles and book chapters in major pediatric tests like Nelson's and our Pediatric Rehab, as well as edited my favorite book to show med students, the Pediatric Medicine Quick Reference, which is all in little nice outline form for them. Over 600 PM&R residents have benefited from her guidance and membership, as have the many peers who still call her for advice. What you really need to know about Maureen is that she has led our Pediatric Rehab group from when the academy initially called us a SIG, or a special interest group, to when we were a council, to now we are a community, and who knows what's coming next. She led us through all the challenges we faced to come together as a cohesive group, to demand content at this meeting, to improve our communication strategies, to recruit students to our field, and to become the powerful group, despite our size, that we are now within this academy. She has been a strong advocate for all of us, but in a very humble and unassuming way. And most important of all, she does exactly the same thing for her patients. So for her knowledge, leadership, and mentorship, please help me thank her and welcome her to the podium for the Molnar-Swafford address. Okay, well, so now, thanks Elizabeth for like making me cry before I start. Okay. Okay. So, and actually, Elizabeth missed one move. I'm actually back in Austin, Texas. So, thank you so much. I am just really honored by this award. It's been great to work with everyone, people like Kevin and Elizabeth and Rita, and others in this room. We've been in this struggle together to try to get Pediatric PM&R as a bigger part of the AAPM&R, and Rita's really pushing this now for furthers, and Kevin. So, it's been a pleasure to be a part of all of this. So, Kevin asked me to talk just sort of about my experience in Pediatric PM&R, and sort of what kind of thoughts to leave the next generation. So, the people who have spoken before are just like brilliant. I'm really impressed by everything that folks are doing. My approach is not in that direction. I don't have, I haven't gone down that road as much, but I'm going to talk to you about some other directions. So, I have no disclosures. So, I'm going to talk a little bit about the history of PM&R, Pediatric PM&R, and just sort of the variety of Pediatric PM&R for those of you who are young and haven't done it all, what it's been for me, and then just sort of try to wrap up. So, for those of you who haven't yet done it, Pediatric PM&R is absolutely the best field. It's like so fun. There's so many options. There's so many things you can do. You can be a brilliant researcher like the folks up here who started even as residents and fellows doing amazing work. You can have just such a broad clinical option. And the big thing is, as you've heard again in the first research thing, you can have a huge impact on people's lives, not only the kids we take care of, but their parents, their families. A lot of the things that we do are intellectual puzzles, especially EMG. And most of it's fun, not the paperwork, of course, but with the kids, most things are fun. Working with a team has been great. And then, again, the fact that Pediatric PM&R is so new, there's a million research opportunities. So, those of you who are into that, it's just a great field to be in. So, just a little bit about PM&R. Basically, we started as a big field after World War I, World War II. We started getting veterans back who have amputations, brain injuries, and other injuries. And so, it started then. And Temple University was the first place to have a residency program in PM&R, excuse me, a PM&R department in 1929. There was a PM&R department established there. And Frank Krusen was the one who did this. He's been a big pioneer that, if you look at PM&R history, his name is all over the place with the first textbook. He and others really worked with getting PM&R established. And in 1947, PM&R was recognized as an official specialty. Polio epidemic in 1962 really pushed Pediatric PM&R. So, just a little bit after World War II, the GI Bill let people like my dad go to college for free if they'd served in the military. But people who had these devastating injuries really couldn't go. There was no access. There was this really forward-thinking man named Nugent who wrote to actually literally every university in the U.S. and said, can I bring a program for folks with GIs with disabilities to your school? University of Illinois said yes, and they started a big program. So, one of the other big things that he did is said, you know what, these guys were really active young men. A lot of them played sports. Let's get sports going on. And so, the first collegiate wheelchair sports were at University of Illinois, and also the first wheelchair sports scholarships were there. Also, another thing, and you can see a trend of University of Illinois. It is where I went, but just coincidental that it's a big place. Well, maybe not coincidental. That it's a big place who's been forward-thinking in this. When I went to college, I would have to go through this big area if it was winter, and you're trying to get out of the snow. You'll cut through the armory, and the armory is where the wheelchair track teams practiced and the wheelchair basketball team. So, you would see these kids all the time and be just amazed. But in 2012, they developed, they built a place called Beckwith Hall that is unlike any other place in the world. It's a dorm that has total accessibility. So, kids don't need keys. Their ID cards will unlock their doors when they come in. They have all kinds of, just the operators that do all the lights, everything. They have ceiling lifts to take them to the bathroom if they need that, and everything that's accessible. They have a computer lab. They have a wheelchair accessible workout gym, and one of the biggest things that they have is a personal assistant program. So, even when I was in school, personal assistant program was huge. This was located where I used to live. My dorm was torn down, and this was put in, but my dorm was also the one where lots of kids were pre-med, pre-nursing, pre-therapy, would work part-time as aides, and they would, like, help dress kids in the morning and in the evening, and so now they have just, at this place, a great personal assistant program. This is the bus so that you can, the campus is pretty big, so if you have to go somewhere far across campus, you can use this bus, and it's amazing, especially in the snow and ice when it's a little tough to get around. There's also, it's a huge sports program. There's basketball and track programs for beginning sports and elite athletes, and actually became a Paralympic training center, so this is part of the training center. You guys might recognize this athlete, Tatiana McFadden. She was a line eye and amazing U.S. athlete. Actually, in the Rio Olympics, in the wheelchair women's 100 meter, there was a USA sweep of one, two, three gold, silver, bronze. That also happened to be a University of Illinois sweep, so just, yeah, I'm totally biased. Yeah, you could put that in here. But again, so back to the polio epidemic, kicking off the pediatric field. So we have the grandmother of pediatric PM&R, Dr. Molnar, you've already heard about. Dr. Ng is another one, so Dr. Molnar had sort of the west coast. Dr. Ng had the east coast. I don't think they had a feud. I'm not sure. No, they didn't. They were friends, but it was amazing. My first, when I was a resident, I went to my first thing, and as Elizabeth said, it was a SIG, so the amount of people who are on this little section over here probably was as much or more than the people that were there back in those days. So it was just like three or four tables of people. So I was there. I was a senior resident. I was looking for pediatric PM&R fellowship, and I was sitting there, and Dr. Ng came and sat next to me, and I was just blown away. And then she started talking to me. I was like, oh my gosh, this is the grandmother of pediatric PM&R, and she's talking to me. Just like both of these women were just such amazing mentors. They're just awesome. And the fact that we have grandmothers in our field is pretty cool. So what about the variety of clinical care? Well, the inpatient care can be consults, obviously, and inpatient rehab unit. And the thing that's amazing is we get to meet people in sort of the most dramatic, scary, just totally life-changing times of their lives. So the impact that we have, the fact that people talk about their relationships is pretty amazing. It's really an honor, and it's really just such a cool thing to have that. Outpatient-wise, you can continue those relationships. It's really fun to see somebody that you, like a kid who I saw on Monday before I came here. I saw him when he was five years old, and now he's 18. And it's just really fun to see that and to have that. And that's also the benefit of going to a town and coming back. So we have folks with neuromuscular disease, trauma, musculoskeletal, sports pain, electrodiagnostics, spasticity, and more. And then there's research, education, publishing, advocacy, international. And I think I count this organization as advocacy and research and education. So for the inpatient, just you all know that there's a huge team that we're in. And I just showed this so I could show the most popular member of almost any team is the rehab dog, if you're lucky enough to have one. Popular with the patients and with the team, for sure. I've been in team meetings where we're like fighting over who gets to sit with the dog. A lot of electrodiagnosis. It's really funny. When I was a resident, I had been around folks during my medical school when I was doing pediatric PMR rotations and the pediatric tendings I had didn't like EMG. So when I got to residency, I was like, I'm doing PEDs. I don't really need to know this. It's like I'll do what I have to do, but I don't really. And then when my practice shifted to a ton of this and I ended up getting my specialty board exam, I had to send my certificate to my EMG instructors from residency and say, I was wrong. You were right. I'm doing this. So I also like electrical stim. I started being a fan of this when I was a patient as a resident and had this myself. So a lot of people do, a lot of people go into sports medicine. A few people go into pediatric sports medicine, which is a pretty cool thing to do. And then pain management is something that is, I think, a growing field pretty much everywhere I've been the last few years. It's like everybody wants to have a pain management team in their hospital, not just injections. And then sports med, like crazy, this is just my department that people have gone. I know a lot of folks in this room have been really involved in the Paralympics, which is amazing. So of course we're doing lots of orthotics. This right foot is a Texas orthotic, a cowboy boot. And then again, this is actually one of my favorite patients. He's got a power wheelchair and he's got a power assist dog too, who's just amazing. That kid also is somebody who showed me a lot about advocacy. So he, as a 12-year-old, was at the Texas State Capitol and in his chair, not able to go inside because it's not accessible, but with groups of people and influencing lawmakers and the public. And telemedicine, sorry, this is sideways. So I just have up here Ken, not just because he's Ken and a 10, but because this Ken has a prosthesis, which is pretty cool. And then the Spider-Man, I really like because I was able to find one for telemedicine that you could move the joints. So if people didn't know what to do on telemedicine, you could do it on Spider-Man and show them what to do. So then for spasticity management, so tons of us do tons of this, which is really exciting. Hopefully nobody shifts our vaccine, our vials. And the cryo, we heard about this on Peds Day and we've heard about that a bit before. It's really an exciting kind of thought. And interestingly enough, I usually talk about also when I'm doing injections and using free spray, I usually say I'm gonna, well, depending on the age, et cetera. A lot of times kids will be excited that it's Elsa spray. So pediatric ITB management, a lot of us do this. And a lot of us have seen these practice ones. It just cracks me up that they have a do not implant, not for human use when it's like all steel and yeah, but anyway. And then hopefully a lot of what we do, most of what we do is guided by research. So as we know, this is a really young field. There's a lot of what we do that is not guided by research, but things like this article, I'll start with the head, the stoplight article has helped guide us and help direct us and direct us in research questions. One of my TCH colleagues just got a $3.174 million NIH grant. To look at intrathecal backline and pediatric dystonia. So yay Sruti, great job. She's amazing. She is such a role model in research. And then advocacy. As I said, this patient of mine was just amazing in what he did advocacy-wise. I think Dr. Glockenflaken yesterday talking about his method of advocacy was just like amazing. Probably generationally it's amazing to me, but just like what a great point. I've done advocacy from the local health board to Congress and with much varying success. But the fact that we're doctors, just remember that gives you some voice. And if you can bring pictures of kids in wheelchairs, that gives you an added voice. When you're advocating for someone else, especially as a physician, people listen a lot better than they do others. So we have to keep that in mind and advocate where we can, when we can. And then doing international work, working in developing countries or war-torn countries is really an amazing opportunity. A lot of, again, a lot of us in this room, I think, have done this and found it really rewarding. And I think not only just doing the medical care, but particularly doing education there and developing programs of education so that folks can take care of themselves with whatever help we can give. And then more of the variety is education. We talked some about this. So the book on the rate of pediatric rehab, the edition was by Mike Alexander and Dennis Matthews, who are sort of stepped down from the next half generation after Dr. Molnar and Dr. Eng, but amazing mentors and attendings and directors for many of us in this room. And the next book is by Kevin Murphy, Mary Mahan, and Amy Hotro, who are just like awesome people who are, again, pushing the envelope with education. And then for me specifically, the Nelson's Textbook of Pediatrics. Nelson's was the textbook we used when I was in medical school. And being a Nelson, I used to say that my great-grandfather started it. He was a farmer, he did not. But it was really exciting. A couple of editions ago, they finally, finally, finally put in a little rehab section. And so a bunch of us in this room were able to contribute to that. And so I hope my great-great-grandfather was really excited about that. And then as Elizabeth mentioned, the textbook on the right, the rehab. I don't know if you guys have seen the quick reference series. It's really cool. They have TBI, they have SCI, they have all kind of stuff. And so again, a bunch of people in this room work with me on this pediatric one, which was hopefully helpful for the pediatric rehab exams. Whoops, there we go. And again, for me, these are two of the biggest influences for me specifically. Dr. Curry on the left, Don Curry, was my attending in San Antonio as a resident. Taught me a ton about EMG. Taught me a ton about just caring for your patients, being really interested in their families and their lives. And then Dr. Dennis Matthews on the right, I was able to spend a month with him during my residency, but it was very formative. And then he was always somebody at meetings that was a dynamo, pushing people along and pushing people to parties as well as to work. It was really funny because Dennis hated EMG and Don loved EMG. So I got those diverse opinions of things. Dennis also, I think, was maybe the first pediatric PM&R chairman of a PM&R department. So that's pretty amazing. And then during my fellowship, this is Mike Alexander. He is on the bottom, surrounded by his family. On the top, he is in the back with crutches and his little brothers in front because he had polio in the 50s. And so he used crutches or a wheelchair for much of the time. He, his story was for parents who he thought were spoiling their kids because of what had happened, whatever their deal was. He would say, yeah, I had polio. My parents, the only thing that was different was they only spanked me on this side because it wasn't affected. But everything else was the same as my brother. So that was his instructions for everything. But he is amazing guy. Gave me tons of opportunity to let me have my first international experience, even though I was really just carrying his suitcases. But still, it was fun. I got to go to Poland with him, which was amazing. And then way back, a start for me in pediatric PM&R, this is from left to right, my mom, my dog, my sister, and me with my good, great little wingtip glasses, which are awesome. Oh, and so that started me with my love in dogs and pet therapy. And then this started my love for aqua therapy. My dad's holding me sort of in the middle and cousins and uncle there as well in some crummy little pool in central Illinois or Indiana or something. And then, again, I have to have one Illinois picture, semi-current, so on the left is my sister, my mom, and a niece and I on campus of University of Illinois at another family member's wedding, and then more family travel. So this is the bottom line of my family. It was just being silly, being fun, being together. So there's my parents, my brother and nephews, and my mom in nature. So my parents were very much about purpose and serving other people and having fun. So I think pediatric PM&R is perfect for that. We serve people every day. We have fun. We can, we can do it in different ways. So this is the contents of my pocket, except for the Ken, he's too big. He just comes in intermittently. But so I always want to have something that somebody can play with, that somebody can have fun with, just to make the kids feel really comfortable. To me, play is like number one. And so I love that. I miss something that I can play and I can evaluate at the same time. So with all these, right, we can test that they know colors, if they know objects, if they can count, if they can catch, if they can visually fix and follow. We can get them to chase most of these toys. If they're little, if they're older, we can just play catch or whatever. We can have people kick. So I love that that's there. Also, by the way, my Jasmine in the middle has over the years lost an arm and a hand on the other side. So she's pretty PM&R-ish. And again, I sort of like the thing of zero days without nonsense. So just like having fun when you're seeing things. So SpongeBob comes through. This is also one of my favorite things I have. One of my patients I inherited from my colleague who moved. And I read in the note that he had trypanophobia. I had to look that up. I thought it was fear of drums, but that's actually something really close to that, but not exactly. Fear of needles. So he was getting all his every three months injections done sedated. So after a couple of visits, I asked him if we could try to do it awake, and we did, and he's been great. And then he painted this for me in art class. So he had this matted, and I love having this. And then EMG. So as Elizabeth said, I like doing this a lot, even though I said I wasn't going to when I was a resident. But I've really loved doing it. I think it's a really fun intellectual puzzle. My favorite are brachial plexus and peripheral nerve things. This I was really excited to just find. Leonardo da Vinci's drawing of the brachial plexus. So this amazing artist. It turns out he used to dissect cadavers so that he would know the best and be able to do the best art. So I think that's pretty amazing. My simple brain, though, likes this drawing. I love it because it's, you can just really, it's a great way to, like, I work with residents with this all the time. It's teaching the residents that you can just really logically go and figure out where a lesion is with this. And with brachial plexus, when I was in Texas Children's in Houston before, and now my new Texas Children's in Austin, a brand new hospital, there we did a lot of brachial plexus. I got to be in the operating room. It was really fun. So we could, we put electrodes on anything we wanted to look at. We did evoked potentials. And then I had a, so I would sit there, the surgeon would draw the picture that he saw, and then we'd do this. So it's really cool to see the anatomy. The residents loved this. We could stimulate right on there with, we didn't, the surgeons did with sterile electrodes. I don't know if you could see, but the one with the red loop, just inferior to that, there's a little vessel that's compressing that root. So it's really fun to be able to see all the variation that's in there. So we would do electrical studies, and it was really, really fun, because it was the only time I got to see a, tell a surgeon what to do. So say this works, this doesn't work. You connect this and this and this. So that was really fun. And here's the nerve grafts. It also was really fun because when they were, everything, of course, is under microscope that they're doing, and when they do this, you couldn't see the thread, and you could barely see the needle. So I would tell them they weren't really doing anything, but they just did amazing. These are fascicles that are attached. And then just to see the growth that would happen after is just amazing to see how our bodies and things can grow. And this is just one of my favorite little kids who just had a brachial plexus injury, came to us later and had a musculotendinous procedure. It was really funny because she was in the hospital with another kid who had this done, and they were both sort of walking around the unit. And just to show how much we don't know about what other people do, somebody was like, oh, were they conjoined twins? So I don't know how they got that, but I guess because it was opposite arms that were splinted out. But anyway, she was an amazing, fun kid. She also was a kid who, after the family had missed a couple connecting flights going home, they came from another state. The mom was telling us later that they missed these flights. The parents are just dragging, going crazy. And the flight they were gonna get was delayed again, so they went to McDonald's to get nuggets. And she opened them up and said, wow, this is my lucky day, I got an extra nugget. So just to have that positive kind of thing with kids is amazing. Again, I like aqua therapy wherever that is. Not classic, of course, but. And then doing sports camps. So this is really fun. This is a camp, and a program that has more than camp, but this is just a place where I've been a camp doctor. My partner was camp doctor, actually, last weekend. And then I think the thing that life and PM&R has taught me, there's more than one way to do things. There's always a variety, there's always a spectrum. And the great thing is that we can just all learn from each other, always. You know, the residents and the students, they know things that we don't know. And as one of my patients tells me, Dr. Nelson, you're computer challenged. So, and of course, he grew up with them. And yes, he's much better at it than me. This kid, you probably can't read it, and it's misspelled, but because it's in his words. So this is a kid with an amputation. And it says, don't for one second long for what you were, but recklessly pursue what you can become. And I think thinking about recklessly pursue what we can do is like a thing that's great for patients, for all of us, for all of life. Maybe not recklessly, but, or at least with a helmet, I don't know, but, so, and I wanted to just say two motherly, grandmotherly, a couple of grandmotherly and motherly things. So always use sunscreen and wear a hat so you don't have skin cancer things. When you hit 50, get your shingles vaccine, because that's a terrible disease, which by the way, was my first diagnosis I ever made on myself in medical school. And then just, you know, just try to, just try to be the change that you wish to see in the world. It's been great doing Pediatric PM&R. Hope you guys love it as much as I do. It's really, really fun. You meet great people, great teams, and great organization. So thanks very much. I really appreciate the honor and time. Thank you. We're not going to let her leave too early here, guys, so come on up to the mics. You get a chance to talk to one of the greatest in our field, Dr. Nelson. We've seen quite a change over the past three, four decades of the healthcare and the systems and the corporate medicine, and the field has evolved. Do you have any advice on how to best meet the challenges in the future here as medicine has evolved and will change further, maintaining our field of expertise and care to the kids as the systems get bigger, sometimes the patients get smaller and smaller and physicians become smaller in the big, huge systems? Any comments or advice on how to keep the meaning and keep the fun and keep the joy of the field? I don't think I have the wisdom for that, but I would just say just being flexible, being ready to change, just keeping aware of what's going on. I think flexibility and hope and just trying to see the fun in each moment, I think, yeah. Hello, is this working, able to hear me? Yes. Okay, great. Thanks for my question. Thank you for the wonderful presentation highlighting the future of care for those with childhood onset disability. My name is Kevin Mullins. I'm an assistant professor at the University of California, Davis. One of the early slides in the discussion you just had a moment ago highlighted the role that fear plays in our pediatric patients as they undergo this transition from pediatric clinics to adult-based clinics, and in fact, minimizing fear and stress is one of the integral parts of integrative medicine, a branch of rehab which has been talked about at other topics this week. I wanted to share one case and hopefully get your feedback on this. About a year ago today, I began caring for an 18-month-old boy who was diagnosed with segmental dystonia. As everyone in the room knows, no child of this age has ever been documented to recover from this disease, and in fact, dystonia is a progressive disorder that affects 500,000 in the U.S. It's the number one movement disorder in children. However, we managed to fully reverse this child's condition. So how do we do it? Well, the family preferred to avoid medications, and so they were all in with trialing the most intensive cognitive behavioral therapy ever attempted, which focused on significant stress reduction and retraining of the brain via an intensive home, physical, and occupational therapy program. But most importantly, what did we not do? Anything that could potentially cause even the slightest amount of stress to this 18-month-old. No injections, no vital signs at any doctor visits, no separation anxiety. Both parents took full leave from their jobs in order for this to work. And probably the hardest part of all was rarely ever saying no at home. This toddler was king in his home, and no diapers became the daily attire, which was a big winner for the kiddo, not so much for mom and dad. Nonetheless, over the course of this intervention, about 10 to 12 hours a day for many months, the child's dystonia not only stopped spreading, but actually fully reversed, and he's now been symptom-free for eight months. Not only that, he's actually, as of today, ahead of his peers in terms of his motor skills and motor abilities. So I ask, essentially, number one, if you see a future of integrative medicine in pediatric rehabilitation, maybe some of the challenges we might face with parents who are not willing or accepting to make changes to the environment. And similarly, if you've had a case similar to the one I've shared. I really appreciate your time. Wow. I've never seen anything like that. Wow, it's amazing that two parents can take off work for all that time. I don't know many people who could do that. Actually, I don't know... Well, I probably know one person who could do that. That's just kind of astounding to me. I've never heard of that before. Again, the practicality of how many people could do that is, I think, infinitesimal. That's exciting for them. I don't know. Anybody else have any great ideas? Any other comments from the room on that? We'll just open the floor up. Great thoughts. I know there's more people here who did a ton of dystonia. Anybody else with dystonia thoughts on this? The question was, is it sustainable? So the parents have both returned to work. They actually welcomed a little sibling into the home as well during all this. And there weren't any relapses. So the way we looked at it was like it was a bolus dose of anti-stress and intervention. Now the parents have made some changes that are sustainable so that the symptoms hopefully don't return. But that's why I asked because, of course, it's kind of a new approach to this. I have a question. Did the symptoms disappear before or after the second sibling's unit? I'm so sorry. I actually can't hear you. So did the symptoms disappear before or after the second sibling's unit? So they disappeared before, which is why the parents were all in on this plan. They were afraid that if there was a stress component to the condition that it would amplify with the new sibling. And so it was a couple months before the sibling came in that they were able to get those symptoms to go away. And didn't change when the baby was born? It did not, no. That's impressive. Thank you.

Dr. Molnar Lectureship

pediatric rehabilitation

PM&R Pavilion

code of conduct

Dr. Christina Sarmiento

cerebral palsy

transition process

Jacob Neufeld Article

Dr. Maureen Nelson

patient-focused care

research grant