Thank you all very much today for coming to the Dr. Molnar presentations for 2021. I'm Dr. Kevin Murphy. I like to just begin by describing the presentations themselves. It's a working relationship between the foundation of PM&R and the Academy of PM&R. It's based on three pillars. The first pillar is a presentation by the pediatric poster winner, the pediatric poster winner. And I'm going to try to share my screen here as I move in this direction. Thank you for giving me a little time here. The pediatric poster winner from the current year of the Academy meeting. It allows a younger person in our field, a colleague to present to a national audience and we're very thankful for that. There was no competition this year for posters or last year because of COVID. So for this reason, there is no poster presenter today, but we do in place have Dr. Ed Hurwitz from the University of Michigan presenting on bone health and cerebral palsy over the lifespan. I think this is a very nice presentation we'll all enjoy. The second pillar has to do with the Dr. Molnar Research Grant Award that's given out every year, but two years ago we gave it out and we allow the winner two years to prepare for this presentation today. It gives time to have outcome variables that can be presented to a national audience. Another nice presentation for a novel researcher in our field that we're very thankful for. It's also an opportunity for the foundation of physical medicine to see how their money was invested over time to get some feedback and to enjoy the fruits of their investment over time. The final pillar of this presentation every year is the Dr. Molnar Lectureship, and that's given by the person that wins the Dr. Gabriella Molnar Lifetime Achievement Award from the year prior, the Lifetime Achievement Award from the year prior. This year is Dr. Deborah Gabler from the Rehab Institute of Chicago. Now we give our lecturer one year to prepare for the talk, one complete year, and we let the person, our colleague, talk on anything they'd like, but we ask them to make some comments about lessons learned over the lifespan that can be passed on to all of us in the younger generation, in addition to give us some positive guidance into the future. So it's different, it's not a totally scientific presentation as usual with the Academy meetings in the past, it's built on these three pillars, the poster presentation, winner presents the Research Grant Award winner from two years ago presents, and then the Dr. Molnar Lectureship, the Lifetime Achievement Award winner from the prior year presents. I just want people to understand clearly. And thank you very much for coming today, we'll have a nice time. I'll pass it on to Mary Dubon now who will begin the introductions. Thank you, Mary. Great. Thanks so much, Dr. Murphy. So I'm delighted today to do our next introduction. So Dr. Edward Hurwitz is Chair and the James W. Ray Collegiate Professor of the Department of Physical Medicine and Rehabilitation at Michigan Medicine of Michigan, University of Michigan. He trained in pediatric rehabilitation medicine at the University of Michigan, and he leads the adults with disability, pediatric onset disability group at Michigan. He's published extensively in areas such as fitness, risk and prevention of chronic disease and prevalence of mental health concerns. Dr. Hurwitz co-founded and co-directs the Cerebral Palsy Research Consortium of Michigan and the International Cerebral Palsy Health Promotion Group. He's also a member of the Research Steering Committee of the Cerebral Palsy Research Network. So without further ado, I'm going to pass it along to Dr. Hurwitz. Thank you, Mary. Chris, I've lost my mouse on my screen. I can't share screen. Sorry. I've had this happen before. I think we have Chris. Chris jumping in to help out here, Ed. Thanks for hanging in there. Sorry, everybody. Well, Ed's working on it. It's nice to see everyone. You bet, Charles. Thanks again for coming. And Chris, if you're listening to us, our producer, if we want to go to Dr. Brandenburg's talk and come back to Ed later, we can do that too. That's an option you can decide within our time. All right. I got it. I guess we're ready to go. Thanks, Ed. Okay. All right. Great. I hope everybody can see my slides. Okay. Well, thank you very much for the invitation today. I'm happy to talk to you today about bone health and seropalsy throughout the lifespan. This work is being led for the most part by Dr. Dan Whitney, an assistant professor in our department. So this is the image of what our research looks like. There's the fracture prevention phase with pre-fracture factors, which we need to consider to prevent fractures. If that fracture does occur, though, there's the post-fracture healthcare management with possible post-fracture factors, including loss of function, independence, which leads to inflammation, atherosclerosis, muscle wasting, the list you see there. We've done extensive work with large populations of individuals with adults with seropalsy and without seropalsy. And we've seen adults with seropalsy have a high risk of morbidity and mortality because of fractures. Adults with seropalsy, and really individuals with seropalsy throughout the lifespan, have an increased incidence of fractures. In this work, you see the dark black line, which represents the incidence of fractures in people with seropalsy throughout the lifespan. In females, the incidence is higher throughout the lifespan. In males, we were very surprised to find the marked increase in fracture incidence, especially with aging. So fractures are a significant problem, and we need to think about proper assessment and proper intervention. But there's issues with both of those things. When we think about assessment of fracture risk and bone fragility, we think about bone mineral density. And bone mineral density is a ratio of bone mineral content to area. However, when we think about this as a ratio, it all depends on how much area there is, the size of the bone. So a larger bone may have more bone mineral content, as we see in this chart over here where we see the bone mineral content going up with the size of the bone. But it may have a lower bone mineral density. It may be less fragile, be less at risk because the higher bone mineral content and the size, but it has a lower bone mineral density than this small bone, which has lower bone mineral content, but a higher bone mineral density because it's smaller. Individuals with seropalsy tend to have smaller bones. There's also the non-bone mineral density structural trait deficits. In trabecular bone, it includes lower concentration of bone mineral content. The disorganization of the structure is less connected. In cortical bone, there's higher porosity, poor material quality, as I mentioned, the size. So there's a lot of issues we have to think about when we're trying to figure out assessment. What about treatment? Should we use osteoporosis medications? Well, in the study we did of a large population, including 306 adults who had been treated with medications of different kinds, we found there was a significant protective effect compared to individuals with seropalsy who did not take medications. You see the risk ratio with the confidence interval below one. It was consistent for fractures in the vertebral column and lower extremities, and there was a similar risk attenuation to a non-CP population of new users of osteoporosis medications. We were not able to examine the adverse effects, so we still need more to look at this to understand when and for whom these medications should be started. What about physical activity and nutrition? When's the high value times to emphasize these interventions? Well, I'm sure you're saying to yourself, do them all the time. We should all do them all the time. Well, it's easy when it's easy, but what if it's not? How much time should a child spend in a standing frame? What if that child is an excellent student, but they have to be pulled out of class to be put into a standing frame by physical therapists? How much class time should we sacrifice for weight-bearing to decrease bone fragility for future fractures? How much should a family invest in time, energy, and resources? What about vitamin D supplementation? Does it really help? And when we think about nutrition, should we be adding to two feedings, and what should we be adding? We have a couple of studies going on at the University of Michigan. This is an R01 held by Dr. Whitney in designing clinical trials. The objective is to address knowledge gaps for trial design. The aims are to identify risk factors for fractures from a chronic disease and mortality in adults with neurodevelopmental disabilities. Second aim is to determine the cause of fractures in adults with neurodevelopmental disabilities, so we can aim our interventions. And the third is to determine patient and family awareness of fractures as a health risk and other barriers of facilitators of recruiting for clinical trials. The other big study we have submitted is to improve assessment and treatment. It's a Center for Research Translation for Fractures with three projects across the lifespan. The Stereopalsy Project is about development of bone structure in stereopalsy. Bone is a complex adaptive system, and no less in stereopalsy, if not more. The aims are to identify the pathways of femoral structural trait integration for children with stereopalsy with a sample up to 17 years old and a one-year follow-up on each patient to look for changes in several traits. And then to determine the age when femoral structural trait development and integration in children with stereopalsy deviates from typically developing children by comparing to a control group across the age range. This study will aid in the development of assessment pathways and for designing clinical trials and guidelines, clinical guidelines. I look forward to everybody's questions. Thank you. Mary? Great. Thank you so much for that great little snippet there. And so next, I'm going to introduce our next speaker. So Dr. Jolene Brandenburg is a Pediatric Rehabilitation Medicine and Assistant Professor at Mayo Clinic in Rochester, Minnesota. She's an active clinical and basic science researcher, and her research areas are focused on motor neuron development and muscle properties in cerebral palsy. She currently serves as the AAPMNR Chair of the Pediatric Rehabilitation Medicine Community, the Chair for the National Institute of Neurological Disorders and Stroke Cerebral Palsy Common Data Elements Oversight Committees, and is the treasurer-elect for the American Academy of Cerebral Palsy and Developmental Medicines. Without further ado, I'll pass it along to Dr. Jolene Brandenburg. Thank you, Mary, so much for that introduction. And thank you, Kevin, for the opportunity to present on some of the basic science work that I've been doing. As I'm going through this talk, I'm hoping you guys will all start thinking about cerebral palsy. Is it truly all cerebral? I have no disclosures. And when we talk about cerebral palsy, it's hard to get through a talk without mentioning the definition of cerebral palsy. And when we think about that definition, I really think about the brain imaging that I see. And these are some brains of kids that I see in clinic. And one of the things that I've always found very striking is that it's difficult to predict the physical impairment in kids with cerebral palsy when you look at their brain imaging. For example, the first two kids are a GMFCS level 1, yet their brains look very different. One is basically essentially normal. And the second one shows a lot of atrophy and ex vacuo changes, which looks actually a little bit worse than the last child, who's a GMFCS level 4. So one would think if it's truly all driven by the brain, that we'd be able to look at the brain and say, based on this image, I would expect their GMFCS level to be of a certain level or their impairment to be of a certain impairment, which is difficult. So that gets to the point that our understanding of the pathogenesis of cerebral palsy is really quite poor. Our definition doesn't truly fit the clinical symptoms. It's really a heterogeneous syndromic condition. And in fact, many of the targets that we use for treating spasticity and hypertonia and trying to improve motor control are really targeting the spinal cord and the motor unit. Another thing is what I talked about before is that when you have individuals with similar brain images, they really have dissimilar phenotypes frequently. Sort of like something I know Dr. Hurwitz frequently says is when you've seen one individual with CP, you've seen one individual with CP. Our animal models haven't been super helpful in this department either. So our animal models have really focused on modeling CP risk factors. We show that if you have an animal born prematurely or subjected to inflammation in the uterus, that you can certainly cause brain damage. But that brain damage is frequently so severe that the animal dies fairly early or dies even right at birth, or the animal goes on to not really have the symptoms that would be diagnostic for cerebral palsy. The very few animals that display the symptoms of CP really have a complex husbandry, which makes it difficult to continue doing longitudinal studies with those animals. So with that being said, we've thought a little bit outside the box and really focused on finding an animal that displays symptoms that are similar to that cerebral palsy phenotype. So the hypertonia that develops early on, muscle rigidity being smaller in stature. And we found a mouse that has a glycine receptor mutation and displays symptoms that are very similar to individuals with cerebral palsy, we think. So the mouse in front is a mouse that's homozygous for the glycine receptor mutation. You can see his movements are jerky. He's almost sort of bunny hopping up on his tiptoes. He doesn't explore that plexiglass cage as much as his littermates. He's a little bit smaller than those littermates and generally having a little harder time getting around. That's our spastic mouse. And all of our mice that have the homozygous mutation display these characteristic symptoms to one degree or another. So the work that I've done is quite extensive and more than I can outline in this talk, but I really want to focus on motor neurons. And in fact, for this talk on phrenic motor neurons, we've done this work both in the tibialis anterior muscle finding very similar results and have now moved on to the respiratory system. And we found multiple things, but I'm focusing on the fact that one of the key findings is that we found fewer large motor neurons in our mice that have spasticity compared to healthy mice. What does that look like? So when we're labeling motor neurons in mice, the lovely part about using them is that we can actually do specific labeling of motor neurons in specific motor pools. So these are phrenic motor neurons that are labeled with a dye called rhodamine that fluoresces really nicely under laser microscopy. And we can count these and measure these individual motor neurons, their dendrites. We can do lots of things with it. And what we found over here on the left side, and I apologize for those of you who are color blind, the green or gray circles is the wild type mice and the red or the black squares is our spa mice. And what you can see is that there is a distinct, distinctly fewer phrenic motor neurons in our spa mice compared to our wild type. It's about 150 motor neurons on average per side in that phrenic pool for our spa and a little over 200 in our wild type mice. Moreover, when we looked at the size of the soma, the soma was significantly smaller in our spa mice as compared to our wild type mice. And when we broke it down into tertiles based primarily on roughly smaller motor neurons will innervate those slow fatigue resistant muscle fibers. Whereas the largest motor neurons innervate those fast fatigable high force muscle fibers, we find that there is a significant difference in the percentage of motor neurons that spa mice have in this larger group. So overall, we found that there are fewer larger motor neurons in spa mice. We've done other work looking both at the diaphragm innervation ratio and also at diaphragm function. But one thing to think about is that if there's fewer motor neurons in congenital hypertonias like CP, that means that they have fewer motor neurons that are innervating those muscle fibers. When you think about doing activities, particularly fine motor skills, you need a lot of motor neurons to do those precise movements. If you are lacking motor neurons, it's hard to get the precision in those movements that you need. And as these kids age, it's possible that they're starting off with a smaller pool of motor neurons, and then they're getting greater dropout of these motor neurons with aging, which could also have some implications for physical functioning as individuals age. It's certainly something that we're looking at both in the developmental time point as to when this motor neuron dropout is occurring, and also across the lifespan as we're aging some of these spa mice to a year of age, and taking a look at their motor neuron pools and their diaphragm muscle properties with aging. And with that, I would like to thank the folks in the Cell and Regenerative Physiology Lab, particularly Dr. Seek, and all the individuals who have helped me with doing this work. Thank you so much for your attention. Thank you. This is Michael Green. I'll be doing the Q&A component. For Jolene, do you think that CP is primarily a spinal cord or motor neuron disorder? That's a great question, Mike. Actually, I think CP is a combination. It's a developmental central nervous system disorder. So it's all about the interplay between the brain, the spinal cord, the motor neuron, and the motor unit. All of them are disrupted in anything that disrupts development early on. I just think that the spinal cord has long since been overlooked in this condition, and may be a key piece that we can leverage in order to optimize physical function and motor control in these kids. Thank you. And for Ed, we all enjoyed your talk. Any clinical recommendations we should implement in practice that we may not be doing presently? Well, that's what we're trying to find out. But I think the thing that we're going to find out is that at the times of the greatest growth, when there's growth spurts, that's the time to really think about emphasizing getting children up into standing frames, making them more active, and that sort of thing. Again, for kids that are already active, they're already active. But those kids that it takes a lot more effort, think about those growth spurts. Think about adolescence, beginning of adolescence, 11, 12, 13 years old, when there's probably the greatest development of these bone traits those times. And the other thing to think about with your adult population is thinking early, thinking in their 30s, about DEXA scans, fracture risk, and possibly even Fosamax, or an osteoporotic drug. But I'm not really recommending that at this point. We just don't know. But we're going to be thinking a lot about that. And for Jolene, botulinum toxin injections, could they aggravate and cause more weakness while relaxing muscles? I'm not sure that it's necessary that kids with CP are more prone to weakness than if we were to inject a muscle of somebody without. In fact, we haven't found a significant difference in the neuromuscular junctions or the innervation of the muscle by the motor neurons. So I'm not certain that it would necessarily result in a significant difference in that regard. And there's a couple of comments in the chat. I agree, Jolene, as someone who monitors IOM and to tie in Wednesday's unusual SDR cases, monitoring is always variable and interesting in kids with CP. And hopefully we will find the dose of standing that is helpful. So let me just comment on that, that I think that is something that we need to really think about. I go back to that child who's going to be a future attorney, a future physician, who may take a good half an hour of effort to spend five minutes in a standing frame. We really need to think about where we're putting our effort, our resources. There's only so much time in the day for all of us, including individuals with disabilities. So it's important to really understand what we're doing and why. And then there's another comment about IOM in the chat from Bob. I think it's going back and forth between Bob and Matt. Any other questions out there? If not, we can move on to the next talks. Thank you. Thank you. I've got a couple of questions if I could add, maybe we've got about a minute here, but I'm just wondering what your thoughts are on the power wheelchairs that stand that might help a little bit with the standing in classrooms issue over time and maybe more emphasis on that. Yes, I agree, Kevin. And I think, especially in our, well, especially at those times of growth spurs, but really think about that adult population, the power wheelchairs that stand, there is a fear that that may be ableism, right? That we're saying you should stand, but I think we have to think about the physiological issues behind it, the significant risk of fractures, and then all the morbidity and mortality. Mortality of having a fracture can, the risk of mortality of fracture can be double, excuse me, the risk of mortality after a fracture can be double for the adult with sterile palsy than in the typical developing population. That's what some of our studies have shown. So ableism aside, I think the idea of a standing fracture, a standing, excuse me, standing wheelchair and encouraging more standing is a great idea. Just to follow up, a follow-up question there, Ed, gross motor function classification levels, have you broken down the fracture rate or bone size by any of the GMFCS levels? The studies that we've done have been based on large databases, which don't contain the information that allows us to look at GMFCS or ambulatory ability and that kind of thing. That's very important. The grants that we have out there will be, allow us to do that a little bit better, and particularly looking at bone size by GMFCS level, that'll be something that we're looking forward to doing. And just a question for Jolene, really appreciate your talk, Jolene. Have you looked at the differences in the brain tissue with these mice too? If you have, maybe you could share some of that with us. We haven't, but in historical studies using these mice before they had the genetic identification, they have looked at the brain tissue and have not found significant differences in at least the gross architecture of the brain as compared to mice that don't have this genetic mutation. Certainly there's a difference in their glycine receptors, but other, the architecture of the brain looks the same. Great, thank you. And up next is Dr. Maurice Scholz, who is a pediatric physiatrist and the principal of Scholz Medical Consulting of New Orleans, Louisiana. Here to introduce the Molnar Lectureship. Good morning. It is a wonderful sunny 67 degrees in New Orleans and I'm missing seeing you all in person and I'm missing reconnecting and reconvening. I'm looking forward to next year. Members of the Academy, Dr. Deborah Gabler-Spira has worked with families and children with cerebral palsy for the last 30 plus years. She's actively collaborated with pediatric neurology, pediatric orthopedics and pediatric neurosurgery to provide integrated care that maximizes children's potential for function. In addition, she's collaborated with the Sensory Motor Performance Lab to include children in the study of spasticity in robotics. She got her MD at the University of Illinois in Chicago in 1979. Her postgraduate training featured a residency in pediatrics at the University of Chicago and a residency in physical medicine rehabilitation at Northwestern University's McGaugh Medical Center. She's board certified in pediatrics. She's board certified in physical medicine rehab and she's board certified in pediatric rehabilitation medicine. She's been active in the American Academy of Cerebral Palsy as a past president and the current chairman of the publications committee and member of the developmental medicine child neurology editorial board. In the past, she serves as the AMPM and our liaison to the American Academy of Pediatrics section on children with disability. Locally in Chicago, she's been on a Pathways Awareness Foundation board. He is a professor in the department of physical medicine rehabilitation and pediatrics at Northwestern's Feinberg School of Medicine and she has over 111 publications cited on PubMed and served on or is serving on dozens of expert panels, consensus groups and review panels. She is one of the mothers of pediatric physical medicine rehabilitation and has shaped countless careers, advocated for thousands of patients and families and made this world a better place when she found it. Recently, Dr. Gable has decreased her clinical output but you wouldn't know it by looking at her and looking at her schedule, but she's ramped up her commitment to service, equity, family and community. She is a woman of balance because as impressive as her career is, she's a proud wife, parent and a dear confidant to her family and friends circle. She's a fountain of joy and a full boundless cauldron of energy. Ladies and gentlemen, please join me in welcoming my mentor, my colleague and my inspiration, Dr. Deborah Gable Espira, the recipient of the Molnar Award. Thank you, I'm humbled and honored and really privileged to give the Molnar Lecture today. Thank you, Kevin, for your continued leadership at the foundation level and Maurice, thank you for your kind introduction. I have to say I was a little worried about what could come out but I'm very happy that we got through that. My lecture today is meant to tie and illustrate the vision of Gabriel and Molnar to our current state of the art of cerebral palsy. And I think the last two lectures really highlight a lot of what I'm going to try to illustrate. Whoops, wait a second. My disclosures, I'm the medical chair of the Cerebral Palsy Foundation Scientific Advisory Committee and I will talk a little bit about their work. I'm a consultant for Mertz and also Nurocrin but I won't mention those two pharmacology interests. Of course, there were people that inspired the whole field of peds rehab medicine. Gabriel Molnar was one of them. For those of you who don't really know her history, she was in medical school in Budapest in 1950, finished pediatric training and then escaped from the communist control in 1956 of Hungary. She went to New York and she was certified in physical medicine and rehabilitation at Albert Einstein and that was during a time when foreign graduates weren't easily accepted into residencies such as pediatrics. She creatively combined pediatrics and rehab like a lot of her colleagues and found her way to a beautiful spot in Oakland Children's at Davis. She was famous for saying children are not miniature adults and I'm sure every one of us has repeated that phrase to our administrators time and time again. She's pictured here with three of the founders, Angela Bedell-Ribera to Gabriel Molnar's right and then Jesse Eason to her left. Just a brief history for those of you who have not heard this before, PM&R started out as the American Society of Physical Therapists Physicians in 38. They changed to the American Society of Physical Medicine in 44, boards began to appear in 47 and in 1951, rehabilitation was added to the current title of American Academy of Physical Medicine and Rehabilitation. And the timeline of pediatrics is not that much behind. In 1967, pediatric training was included in ACGM-approved PM&R training programs. In 1979, we had pre-annual meetings occur and I think I've attended almost every one since that time and that was really as generated from all the interest in the pediatric community in PM&R. In 1983, the PED-SIG was formed. It was the first of the five original special interest groups. In 1988, joint programs between AAP and AAP-PM&R began to appear and those were five-year programs that fed a number of double-boarded physicians like some of the old timers, which included not me because I did two separate residencies but we were happy to see that that was beginning to appear. 2003, the Pediatric Specialty was born of Peds Rehab Medicine and we met in Chicago that year and gave Dr. Molnar her certificate which you see in the upper, I don't know if you're left or right-hand screen. Boards started in 2003 and after 2008, fellowship training was required to take the boards up until that time you could do a grandfather in. Now we have 322 certificates and I think there's even more identified. Well, there's no question Dr. Gabriel Molnar is my personal shero along with some of the other founders and I wanna dwell a little bit on what I think is important is our Genesis stories, her emphasis, prognosis on function and fun, spasticity management, research and lifespan. So my personal Genesis is that my interest in disability started like many of you as an early experience as a camp counselor in an Easter Seals camp in Joliet where my assigned camper had GMFCS4, was dysarthric, had mixed tone. However, we got along like perfectly. She was smart, she was funny, we had a ball. And I kept that in my heart and while I was doing a pediatric residency at the University of Chicago, lo and behold, my first rotation was in the NICU. And that was during the wild and wooly days of the nursery where everything was wacky. I probably put in three chest tubes a night and could probably still do a umbilical line catheterization. Luckily also chronic care was included in that residency so I spent time at La Robita. But I found the light of rehab by standing in line at the Hyde Park Bank where Helen Emery who had trained with Justice Lehman told me that I would be perfect for this new field that she thinks was exciting called rehabilitation. Lucky for me, I didn't have to go far. I had to go from the south side to the north side to get to the Rehab Institute where I did my residency. At the time, Dr. Betz was the chair and CEO and department everything and was hired on. And he actually gave me all of his CP patients so I inherited a large adult CP community from the get-go. And I think it's always good to understand who your mentor, your advocates, truth tellers and sponsors are and to really be a part of their lives during your career. So going back to that, Dr. Betz was a classmate of Angela Bedell-Ribera. He was trained at Rusk and Deaver and Rusk were colleagues even though Deaver was a little bit older. Deaver of course was one of the co-founders of the AACPDM and Dr. Betz, when we had no peds rehab docs would step up to the plate because he felt children were very important. So in his early years and when I was there, if he felt I was not doing the correct job, he would fly in Dr. Bedell to really go on rounds with me which was quite a way to learn peds rehab medicine. I won't dwell on this because you all know the definition of CP and it was very restricted there. It was a little bit hard to put your hands on and now our CP definition which expanded in 2007 really increases our understanding that this is a group of permanent disorders of developed movement and posture causing activity limitations attributed to a disturbance on the infantile brain or developing brain and totally agree that it is probably throughout the whole central nervous system and not just the brain that is injured. The motor disorder is accompanied by difficulty with sensation, perception, cognition, communication and what we help with many times the musculoskeletal problems. How that is changing our perspective, it creates an emphasis on activities giving us a front and central view. Creates inclusion of all the sensory abnormalities and attributes comorbidities so we know that reinforces the function of the team and that that's very essential. The World Health Organization has gone through an overhaul since I've been around. We used to consider it impairment, disability and handicap but we've moved forward to create a people first language and now function is really integrated into everything we talk about with cerebral palsy. It's a classification that we will unify our ability to understand targeted interventions. CP diagnosis and prognosis then was very common not to be diagnosed until after two and average times for the HEMI is 21 months. No one would accept having a stroke and waiting almost two years before you start any rehabilitation and yet that had been the case for many of the kids with cerebral palsy and hemiplegia. Now of course, we have the early detection pathways that will allow us to make those early diagnoses and be able to help the children early. So in the implementation network you can decrease the diagnosis from and these were in NICU high risk clinics even had late diagnoses to nine months which we are working now even to get to six months time for those high risk infants which will allow much more rapid treatment. But I wanna call your attention. If as you recall, I was in the nursery. I was fascinated by cerebral palsy from the get-go and I wanted to know how the baby that I was handling in the nursery got to the camper that I handled as a teenager and became friendly with. And so I was very happy to come upon Dr. Molnar's first article about prognosis and how to judge it in the annals of pediatrics. And I am certain that every one of you has used her adage that if you have a child with CP who sits before two they'll be independent in the community. Sitting between two to four they'll need support and after four they'll probably need a wheelchair or be non ambulatory. And this was based on her clinical acumen of really watching function. Along with her, Dr. Suzanne Gordon and also Dr. Bedell had a series trying to shift away from the neurologic reflex signs which were common to prognosticate function. And this I think was really a very strong move towards looking at trying to prognosticate function by the early milestones and the development. Prognosis now, we can even generally estimate by six months if we're using the Hammersmith infant neurologic exam. We talked about this at the peds day and it may not be that you are providing that prognostic news to the parent immediately but you're shaping their ability to make functional goals based upon anticipation of their function. So it's really guiding the conversation then to look at functional skills versus will they walk or will they not walk. And it is an art form to relay this information in a sensitive way. But I think that it behooves us all to start thinking early about function and prognosis for the child. This is an illustration of the Hammersmith which is circled and scored and you get a numerical score. And we're all part of the process of trying to prevent the decline in function that we see and we hope to interrupt. And also we understand then the gross motor curves as predictive of the function. So I think that ability to promote and predict function is really a direct result of Dr. Molnar's great work. Now, if we think about state of intervention and management this is an early paper from Helga Binder and Gloria Ng. Two other women leaders, Dr. Binder, I chased her down in Evanston and we were having lunch on a rooftop there. She's still living near her daughter. And I call attention to her classic paper, where prior to this, it was mainly orthopedic management, but she brings up that recent advances in the treatment of spasticity and lower extremity bracing are stressed, and that's something that we as physiatrists have taken on and run with. Going back a little further, Dr. Betz was one of the first people to publish on phenol nerve blocks, and I was very happy to find this article from 1967, and his figure was almost directly copied by Dr. Carpenter, who we've all read his article, as we started utilizing botulinum toxin. So in intervention now, we have these beautiful charts from Iona Novak to look at, which are probably effective, which are probably not. We've got the green bubbles, and I'm proud to say that tone management as well as orthotics are way up there on the chart. So I think that Dr. Binder and et al. hit it out of the park on anticipating that tone management would have a big impact for children. PEDS rehab medicine have been early adapters of tone management, and there's no question we've been considered the leaders in use of ultrasound and localization. Injections of phenol, I think, are almost totally all physiatry. Botulinum toxin, there's hardly a study now that doesn't have a pharmaceutical study with PEDS rehab medicine as a PI, not to mention the rhizotomy and intrathecal baclofen. The Journal of PEDS rehab medicine has a devoted area for needle tips where we review real-world issues about botulinum toxin, and I also want to draw the attention to the recent consensus paper by many of you in the room, which I think will also allow us to utilize that in a, hopefully, more standardized approach. And for those of you who were at the meeting, we have Jay Neufeld and I learning from Catherine Alter many, many years ago. So I wanted to talk a little bit about research then. It's always been very sad to me that CP has been the only condition affecting so many children and adults that receives no funding at the CDC level. But CP research now is gaining ground thanks to the combined advocacy efforts of AACPDM, Reaching for the Stars, and Cerebral Palsy Foundation. Many years ago, I attended Amy Houtro's seminar on advocacy where she said, the most important thing you ever do is to hook up with the parents. And after that, really courted the group of parents who are powerful, that can speak to the legislature and work on the behalf of children with CP together. Appropriation language was introduced in 2007 for increasing funds and for a CP research agenda, and there was the NIH strategic plan in 2014 that brought about many of the ideas that we'll talk about. In 2020, the Senate appropriation language for the CDC, NIH, and Early ID is embedded, and there's Lifestand. And it's a bipartisan support. Hard to believe that we have found something that there is bipartisan agreement on for a dollar amount. The appropriations, as you know, the government has been pretty busy with other appropriations, but this is pushed back to December. And how you can help, every one of you, is to go green CP and influence your senator and your rep to help pass this so that we can get at least on a CDC agenda for research for cerebral palsy. This is a collaboration effort. We have had collaboration as the AACPDM. One of the first presidents was Dr. Jesse Wright, Dr. Harriet Gillette, Dr. Christopher, Dr. Alexander, myself, and Dr. Vargas. We've had very strong leadership from Peds Rehab Medicine and Advocacy at the AACPDM, including Lisa Thornton, Jane Emerson, Chris Lonsford, Kelly Pham, the list goes on, along with representing Peds Rehab Medicine in the NINDS core elements. I think we mentioned that already. The Lifespan Committee, Sports, Membership, Education. We are the general quintessential team players. I'd also like to mention the people that have participated with the Committee on Children with Disability or the Council on Children with Disability at the American Academy of Pediatrics. American Academy of Pediatrics is one of the strongest advocacy organizations on behalf of children, and this in particular represents the children that we co-take care of. I love her idea that we're not the medical home, but we're the best medical neighbors anyone could have, and I applaud you all for being the medical neighbors. So this direct effect of the advocacy, there's an NIH workshop on CP in November of 2014, and the takeaways were that we needed to start a national CP registry and increase the study of adults. The others were down the line there. Out of that, the Cerebral Palsy Research Network was created by Paul Gross, and this is a collaborative network of institutions, clinicians, multi-site across the country. It is an EMR database to collect precise characteristics of patients that will allow us to look at comparative effectiveness and also homogenize our data. They have a data coordinating center, and I'm so jealous of everyone who is involved with it. Unfortunately, we have Cerner, and we haven't made the red cap conversion yet. They also have a patient-reported outcome registry, and we know that many of our members are involved with that and at high leadership levels as well. I don't want you to be confused, and don't stop advocating. CPRN does not equate or equal a national CP registry, which needs to be population-based, and they do exist in countries with organized, coordinated healthcare systems, but they're very hard to build. I think anything is possible. Australia started as a state-by-state over 15 years, so everyone who lives in a state, which happens to be all of us, should start thinking about this. Without population registries, we really can't look at those trends in prevalence, severity, and outcome that we need to do. We need the CPRN, but we also need a basic network. That brings us to aging. I think that this is the first paper. This is Kevin Murphy and Dr. Molnar, who identified the unmet needs and decline in function of adults with CP. This makes me think kids are not just small adults, and adults with childhood disorders are not just larger kids. They have particular, specific needs that we need to address, and we all know that the functional concerns of adults, fatigue, pain, decreasing walking ability, regression in walking skills, decline with age, and that physical inactivity is one of the most detrimental processes that go on for propagating impairment of function. Again, many of our early readers, Peg Turk, she had an interest in this, and she was a two-time Hank Chambers Lectureship awardee and did a terrific job. Our lifespan model now shows that we really have adult voices that are important. We need to know and consider. Dr. Hurwitz is making a major contribution of CPRN on the QI on aging, and we know that there's a lot to come from that as well, so we thank that. When we think about the trends in publication about CP from 1990 to 2020, over the past 30 years, the topics have changed from diagnosis, brain pathology, to include performance, aging, health, and function. We're making an impact on the publication, and that the Peds Rehab Medicine practice has increased in their research among the titles. However, we know that there's a lack of funding. Indeed, our future is bold, I believe. Our future has been bold in the past, but from the sounds of the lectures that we heard today, it's getting bolder. We're really at the process of evaluation, diagnosis, management, and quality of life, and advocating all round players. So I hope that you appreciate the very rich history of involvement in the area of CP that Peds Rehab Medicine has had. We've been leaders in the discussion of diagnosis and prognosis, leaders in the management of teams and spasticity, leaders in promoting research and supporting efforts, leaders in aging with childhood disabilities, and we have collaborated with other like-minded organizations to the benefit of the child. So now that I'm passing the baton, I want to thank to all the past, present, and leaders for inspiring the future, which is you in the room, and I wish I was all there to give you a big hug. So thank you very much. Thank you so much, Deb. That was great. Thank you, thank you. There are a few questions, if you don't mind, I'll just go right into them. Question one is, what is the difference between a mentor and a sponsor? I sort of say I'm going to live and die a rehab doc. I think of it as a functional difference. A mentor has mentees, a sponsor has proteges. I look at everyone as a protege, and the sponsor sort of supports and drives a career, where a mentor really sort of helps craft a career. I think of the difference between giving someone a shove and giving someone in the huddle. So I know I'm old-fashioned, but I guess I try to push people up to a new level as a sponsor. There were a few questions regarding GMFCS as we age. If there's any data about how each GMFCS functional capabilities maintain abilities or describe their abilities as they age. Right, I think that that's definitely going to be evaluated and be able to have more precise information with the network, such as CPRN. Because obviously we have some of the original work that explains the percentages of change. But I think if you listen to the voices, there is quite a bit of fatigue, there's quite a bit of depression that overlay that. So I think at this point, we don't really have a good grip on that. There's a few comments back and forth in the chat about diagnosing cerebral palsy at a younger age and then wanting to do botulinum toxin injections to a younger population. I guess the question for you is, do you have any comment on whether or not this should be done? And is there an age limit on the younger side that you would not inject? I think that's really an interesting question. If you look at, I'm very familiar now with the work of the Early Detection Network. And they have a systematic review about spasticity or tone in the infant under two. And one of their recommendations is that botulinum toxin can improve the tone and reduce the pain. And I think we always have to balance the immediate need with the long-term future. I don't think botulinum toxin has ever cured CP. So I think if you're using it for a specific goal and you meet that goal, you've done that for the moment. What you've done for the, or interrupt the process, is quite different. I think that those are long-term questions that really need to be evaluated. Because there is a trend now to say that we've injected too much, we've weakened the muscle, we've made it harder. But we all know from our experience that there are people that, with a specific goal, you do see them every three to four months. So I think it's still a little bit hard to make a generalized statement from the whole population. So for instance, of course, I've injected kids as young as nine months, even earlier. But it's for very specific reasons. Some of which would include kids that are so fragile that they wouldn't be able to tolerate surgery. You want to try to reduce some of the tone of the adductors because of the subluxing, dislocating hips, even at nine months or earlier. A follow-up to that question, do you feel that there's any increased risk about antibody formation with doing earlier and earlier injections? It depends on which toxin you use, and I think it's going to be very toxin-specific. I think, again, the antibody formation, it's never been impressive to me in terms of the incidence of antibody formation. I think it's more of a concern if you're really thinking you need to do it over time. And I think if you're finding yourself doing something over time, you have to think, is there another way that you could solve the problem? I would say that, again, I don't really have the information to answer that. And how will virtual care change our future? Well, that's a good one for me. I think it's going to allow us to extend ourselves into many situations that we haven't been able to reach. I really appreciate the remote world for being able to bring us connected, but I think there are some things that won't be able to be replicated. You guys will have to determine if you think it's as intimate with the patients as when you're in the room with them. I happened to retire my huge practice right at the moment of COVID, and so I could never even imagine not being in the room with someone and not reading the body language and not seeing in the room what was happening. But I do appreciate the fact that you get to go to their home and see their kitchen and you get to see who else is there. So I think that it's a positive and a negative. Thank you very much. Dr. Murphy? Well, thank you, everybody. And if, Mike, there's a couple of questions or two for Dr. Gable, that's fine. If not, I can spare a minute or two here if you'd like. Sure. There's one more question. What do you think is holding us back from a national CP database? I wonder if one day we'll have a PD or CP model system. Yeah. You know, coming from an institution where they have many model system grants, I had been pushing for that for a long period of time. But the issue is that there's a lot of politics in the granting mechanisms, like everywhere. And there's not a clear, definite time at which you can take the acute care to the outcome. Like spinal cord injury, you know when it occurs, they go to a spinal cord unit. Head injury, you know, there are specific time discrete entry points. That is an acute care entry point, which doesn't happen for cerebral palsy. So a model system, I think, is a wonderful concept. And it might occur with something like an early detection network where you can follow the infants very carefully and get the early diagnosis. From the national database, I think it's the same thing that's holding us back from a national health system. You know, each state is administered differently, so very rarely do we cross lines. There are so many different payers, even if the majority are publicly funded. So I think that there's just many barriers to that. But I don't think that it's inevitable that we can't get around them. I just think it's a matter of keep at your local. You know, it's good to think global, but you always have to act local. Thank you so much, Deb. I would like to second Mary's comment of you being a Shira to all of us. Thank you. It's been my pleasure. Very good. I hope to see you next year in person. Thank you. Thank you very much, everybody. And before we sign off, please consider donations to the Dr. Gabriella Molnar Fund and also the Journal for Pediatric Rehabilitation Medicine. It's very important to keep these things going. Have a great year. Thanks for being a part of it today. God bless you all. Thank you. Goodbye.

Dr. Molnar

pediatric rehabilitation medicine

cerebral palsy

aging with childhood disabilities

early diagnosis

intervention

botulinum toxin injections

tone management

national CP registry