CNS Connections Fall 2023 Issue – Public

Fall 2023

Bringing CNS Members Together to Make Children’s Lives Better

SHARING THE FUTURE

CONNECTING THRU COLLEAGUES, CAREERS, CRAFT, CALLING, AND COMMUNITY

Upcoming CNS Scientific Program

Webinars You Won’t Want to Miss

Tuesday, January 16, 2024

Thursday, March 7, 2024

Did it make a difference?

Challenges for assessing non-seizure outcomes and clinical trial readiness in the developmental and epileptic encephalopathies

The headaches you don’t want to miss: IIH, cranial neuralgia and the other secondary headaches you should know

Thursday, April 18, 2024

Tuesday, January 23, 2024 Reproductive healthcare for the child neurologist: multi-disciplinary perspectives

Tuesday, February 27, 2024 Sensory processing challenges in neurodevelopmental disorders: a common, treatable yet often neglected element of our patient’s lives

Genetic generalized epilepsies – improving diagnosis and management

Thursday, June 6, 2024 Lifespan approach to patients in the neonatal neurology clinic

PLUS... the monthly Research Committee Webinar Series

Upcoming Webinar Information https://www.childneurologysociety.org/ – Craft – Upcoming Webinars

Webinars are offered non-CME

CO N T E N TS

MAGAZINE

CO N N E C T I NG W I T H . . .

COLLEAGUES

4 Letter from the President

Key Features of the Emerging New CNS

6 Q&A: Looking Back and Forward

With Bruce H. Cohen, MD, Immediate Past President of the Child Neurology Society

9 2023 CNS 52nd Annual Meeting

Photo Gallery

CNS Connections is the official news magazine of the Child Neurology Society. The title references the passionate professional interest members share in neural connections and their commitment to connecting to and staying connected with the peers, colleagues, mentors, mentees – and, above all else, friends – in the field with whom they share a career, craft, calling, and community.

CAREERS

24 Personnel Directory

CRAFT

14 Synapses

Evidence That Botulium Toxin Works for Pediatric Migrane

16 Synapses

Perinatal Ischemic Stroke Can Lead to Autism

18 Synapses

Use of Lamotrigine or Levetiracetam During Pregnancy: No Adverse Effects on Infant Development

COMMUNITY

20 Child Neurology Foundation

A Letter from CNF CEO/Executive Director

Child Neurology Society 1000 West Cty Rd. E, Suite 290 St. Paul, MN 55126 Tel: 651/486-9447 Fax: 651/486-9436 nationaloffice@childneurologysociety.org www.childneurologysociety.org EDITOR

Daniel Bonthius, MD, PhD MANAGING EDITOR

Monique Terrell DESIGN & LAYOUT

Kimberlea Weeks | CEVA Design LETTER FROM THE PRESIDENT

Important Updates from the PECN PAGE 22

Published 3 times yearly ©2023 Child Neurology Society

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CO L L E AG U E S

Letter from the President CNS PRESIDENT Peter Kang, MD

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It was exhilarating to see so many of you in Vancouver this October for what I consider to be our annual reunion. You, the membership, are the heart and soul of the CNS. What I found most energizing was to see us exploring new ground while maintaining our most cherished traditions.

Some key features of the emerging new CNS include: 1. Ongoing educational offerings throughout the year that reflect updated means of communicating and learning, including the webinar series from the Research Committee and our podcasts, along with the valuable maintenance of certification (MOC) offerings.

2. Vibrant Special Interest Groups (SIGs) that will continue to serve as laboratories and hubs for new ideas and mutual support.

3. More formal committee governance and structures, with set term limits that will enable more members to cycle through these valuable groups and more defined charges from the CNS Board.

4. A merger with the Professors and Educators of Child Neurology (PECN) that will take effect in 2024 and enable our combined organization to keep our training programs and educators at the forefront of our field.

5. And last but not least, annual meetings that capture the spirit of child neurology and child neurologists in the 21st Century.

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To keep this momentum up for many years into the future, we will have to pay particular attention to new financial models for the CNS. We, unfortunately, have a sizeable deficit for 2023. We have already taken steps to reverse this, but we will need help from all of you to continue finding our way to a better path. A few notable developments: 1. We will begin a fundraising campaign to provide more support for previously unfunded activities, including some of the awards at the Annual Meeting.

2. We will begin more systematic, thoughtful engagement with industry partners. There is an exhilarating burst of new neurological therapies that are either recently approved or are in late stages of development. Many of these new therapies are at the cutting edge of molecular technologies, including gene therapies and antisense oligonucleotide therapies, with more to follow. These therapies would not be possible without the hard work of industry partners. Open dialogue and partnerships with industry will enable us as child neurologists to stay at the forefront of new technologies, learn how to contribute to their development, and use them thoughtfully for our patients.

We also recognize the increasing complexity of the world of child neurology. Though we will continue to maintain our focus on our core

The Annals of the Child Neurology Society (ACNS)

membership of child neurologists in practice and in training, there are many other professionals and trainees who contribute to the care of children with neurological disorders or conduct research relevant to childhood neurological disorders and would find engagement with the CNS to be valuable. Such individuals include scientists, graduate students, research study coordinators, neuropsychologists, physical therapists, occupational therapists, speech/language pathologists, and many others. We continue to value our collaborations with the Association of Child Neurology Nurses (ACNN) and the Program Coordinators of Child Neurology (PCCN), who represent the nurses and program coordinators that many of us work with every day. And of course, a major change that I have seen in my clinical practice and research activities over the past two decades is the increased engagement of patients and their families in clinical care and research. The more resources we provide that are helpful to all of these stakeholders, the more they will be drawn to the CNS. Our allied organization, the Child Neurology Foundation (CNF), has been a pioneer in broadening our stakeholder connections, and we look forward to working with the CNF on joint programs in the future.

Through all of these momentous changes at the CNS and in our field, I would like to make leadership development for child neurologists a hallmark of my term for the next two years. I see every child neurologist as a leader, whether that be in a clinical practice setting, clinical research team, translational medicine, or laboratory science. I would like the CNS to become even more of a leadership incubator than it already is, with an increasingly diverse array of members cycling through leadership positions at the CNS and at their home institutions. We will continue and enhance our commitment to career development activities at our annual meeting and through our other communication channels, so that our members will be emboldened to lead the way to a better future for our patients and for us all.

I look forward to sharing the future with all of you! •

ACNS publishes peer-reviewed clinical and translational research articles, epidemiological studies, topical reviews, case series, case reports, educational image vignettes, quality improvement articles, and commentaries on medicine or societal factors that affect the care of children with neurological disease.

Additional Information https://www.childneurologysociety.org/ – Colleague – Annals of CNS

Read the latest issue of ACNS annalscns.com

Bringing CNS Members Together to Make Children’s Lives Better

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Looking Back and Forward With Bruce H. Cohen, MD, Immediate Past President of the Child Neurology Society

BY DANIEL J. BONTHIUS, MD, PHD, CNS CONNECTIONS EDITOR

Congratulations on completing your term. What is your proudest accomplishment as president of the CNS?

Bruce H. Cohen, MD Akron’s Childrens Hospital, Akron, Ohio

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I appreciate your congratulations.

Being elected president of the CNS is the largest honor of my professional life, and serving as president has been a joy. As the CNS entered its 51st year in 2021, we were faced with several major situations that needed fast action. As president, my job was to gather opinions, build consensus, and let the team do their assignments. Having support from the board members also helped!

The first task was to address the disparity created by lack of equity in the CNS. Phil Pearl created the Leadership, Diversity, Equity, and Inclusion workgroup that identified the equity issues within our organization. Recognizing their great work, my first request from the new board was to elevate the workgroup into a full committee. This committee has performed and delivered. Our organization still has work to do, but we are making real progress.

At the start of my term in September 2021, the world was beginning to return to normalcy.

We were able to have an in-person meeting, which was an enormous success, but we knew that the world was changing. When I first entered the Hynes Center in Boston,

the security guards thanked me for having a convention that allowed their employment. That meeting was a hybrid event, with hundreds of members attending virtually.

When the financials of the meeting settled, we realized the huge expense of broadcasting a meeting live, but we had pulled it off. We learned from our following meeting in Cincinnati that the world of society meetings has changed. The cost of live broadcasting would not be sustainable for future meetings.

We also learned that our corporate sponsors and exhibitors had changed their business models because of the pandemic, so our approach to finances must change as well.

This realization will result in a new business model for the CNS that will address the pandemic-induced New World Order. This was not my work, but I listened to the smart people around me, especially Lori Jordan, our Secretary-Treasurer, to implement this.

Another issue we faced was finding a new CEO for the organization. At the start of the 50th Annual Meeting, Roger Larson, who had served the CNS for 40 years – the last 10 years as executive director – announced his retirement. In addition, Roger was the poet laureate of our organization, represented the institutional memory, and probably knew more child neurologists than

anyone else on Earth. With the help of Roger and Phil, I appointed a CEO search workgroup consisting of a diverse representation of our membership. This workgroup hired a search firm, conducted hours of data reviews and interviews, and ultimately selected Monique Terrell as our new CEO. Monique brought a remarkable skill set to the organization that allowed a smooth transition.

I am most proud of selecting the search team and helping organize the transition of leadership from Roger to Monique.

I am also proud of my role in creating the Early Career Forum, and letting the leaders of this program, Ariel Lyons-Warren and Alex Cohen, do their magic.

Finally, I began the tradition that each person elected president now has defined work in their incoming president year that gives them time to prepare for their term and defined work in the year after their presidency to assist the incoming president.

Thus, the previous two-year term of president is now four years of defined work on the board.

What was the most surprising aspect of the job for you?

Each week, some unforeseen event occurred that needed to be dealt with quickly or that would require months of work. Much of the work as president is not codified. Often, this requires consulting members of the society for advice or representing the CNS in some capacity. I should have seen this coming when, while walking in the Hynes Convention Center during my inaugural week as president, I was approached by members requesting my help in getting projects launched. Some of these great ideas came to fruition, while others did not because of personal and organizational bandwidth.

What did you learn as CNS president?

It is my instinct to “do it myself,” but I learned that our membership has enormous talent at all levels of experience. It was a humbling two years. I served with pride, but it was not easy. I was challenged by issues facing our society every day.

I remember coming home from the Boston meeting with a major new issue facing the membership. This required telephone calls to former presidents and board members over the next week and additional meetings before I could formulate a plan. The African proverb “It takes a village to raise a child” comes to mind, and I relied heavily on Roger Larson and then Monique Terrell, Phil Pearl, Peter Kang, Lori Jordan, the CNS board, past CNS presidents, and my personal coach.

As demanding as the CNS president’s job is, along with your leadership role at Akron Children’s Hospital, how did you manage the time demands?

In 2012, CNS President Steve Roach called me multiple times over several weeks regarding my role as chair of the Practice Committee, the origin of the Hower Award, and other issues that were part of his “information gathering process.”

I could not believe how much time he was spending with me.

During one of these calls, I asked him how many hours he spent on the presidency, and he replied, “about a day a week.” I assumed that he meant an 8-hour day each week, but he really was referring to the literal definition of “a day” – 24 hours – a week. Anyone who knows Steve can appreciate his definition of a “day” of work. I never kept track, but there were

several 24-hour weeks. The job of CNS president was generally a 12-15 hour per week commitment. My family life was disrupted by all the meetings that occurred from 6pm to 9pm, and I thank my wife, Anna, and my kids for their tolerance. I also received generous support from my colleagues and leadership at work.

And, thankfully, wonderful support from the CNS National Office.

What are the most important challenges facing the CNS? There are two. The first is relevance to the membership. We are a different organization than we were when we began in 1972. The role of child neurologists has not changed much in the community, as we are still healers and scientists. But the shift in employment models for our members, the demographics of our members, how members must go about their days, the demands of home life, and the diversity of our members certainly have changed.

One of my goals as president was to complete the membership survey, which was a larger task than I had imagined, the results of which are going to be reported. Without discounting the complexity of the society during the early years, the annual meeting was the central event that gathered the 128 members for scientific presentations and socialization. The complexity of our society and the needs of our membership have changed.

The second important challenge is financial. The economics and compliance requirements of running a membership society have evolved enormously in the last decade.

After a dozen great financial years that provided a financial cushion to weather the current deficits, the business exigencies for running our society have changed, and we CONTINUED on page 8

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Looking Back and Forward CONTINUED from page 7

must adjust. The models of financial support from our sponsors have drastically evolved. The royalties that we receive from our journal, which had been supported by pharmaceutical advertising, is only a fraction of what it had been.

Furthermore, the cost of putting on the annual meeting has drastically increased. While these changes were brewing before the pandemic, the confluence of the impact is now felt most acutely post-pandemic. The board has made decisions to turn around the financial situation, and, with the support of the membership, will turn this around within a couple of years.

What can the CNS do to maximize its value to its members and to society?

During the last decade of financial success, our auditors reminded the board to invest (aka spend) our extra funds on our membership, such as by advancing the careers of our membership and promoting science.

We have done that continuously and have launched several new programs in the last few years. These include increasing the number of presentations at the annual meeting, expanding the number of named awards, helping fund the Pellock Symposium, supporting the CNCDP Program, adding symposia and presentations at the annual meeting, changing the structure of committees to ensure our commitment to LDEI, adding an early career forum program that offers leadership and speaking opportunities through programing at our annual meeting, and launching our own journal, the ACNS. Other initiatives include our new mission and

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vision statements, the creation of an LDEI committee, the merger of the PECN into the CNS, the creation of a Fellow of the CNS program, bylaw revisions that facilitate reinstatement of membership after dues lapses, and the creation of a formal board governance norms and human resources management. All of these programs and initiatives are an investment in our membership and were necessities, but they all cost money and time. Now that these are in place, we can take a breath, then regroup and make more advances.

members of our society, including our patients. For example, the new child neurologist will be front-and-center in the evolution of our fee-for-service payment model to the capitated care model. Instead of wasting time on prior authorizations, they will serve as leaders in deciding what therapies are worth using. It is not easy, but no one chooses child neurology as a path towards an easy way out.

What would you say to a medical student who is considering a career in child neurology?

My time is not over. I have a year on the board as the immediate past president and our bylawsmandated assignment as chair of the Nominations Committee. Given the activity that our board is already handling during Peter Kang’s term, it will be a busy year. I will have been a board member for 11 years and the PCN president for the two years prior, so the 2025 annual meeting will be the first meeting in 13 years that I do not have board meetings to attend during the annual meeting. I plan to enjoy the programing and socialize with the friends that I have made since my first CNS meeting in 1986. I will not turn my back on the CNS, but I don’t want to overstay my welcome, either. I may ask for an appointment on the Archives Committee, just to organize our records and photos. It is time for someone 30 years my junior to take the lead. I still have work in other organizations: I am now chair of the AAN’s Advocacy Committee, and that will keep me busy through 2027.

Thanks for the opportunity to reflect on these questions! •

This is the best time ever to be a child neurologist. In the last 10 years, we have benefited from huge changes in how we diagnose and treat patients. With advanced genomic testing, we no longer need to spend months or years searching for rare diagnoses. We are identifying genetic etiologies of many of the epilepsies and cerebral palsy. In addition, we have genuine treatments for diseases, that were considered untreatable a few years ago – and more therapies are on the horizon. New treatments are not limited to the rare diseases, with migraine, epilepsy, and the autoimmune disorders serving as examples. Yes, there are new challenges, such as prior authorization and the high cost of these new therapies. However, the new generation will have great opportunities to solve many of the social and economic problems that affect the most vulnerable

What’s next for you now that the CNS presidency is behind you?

2023

CHILD NEUROLOGY SOCIETY

52nd ANNUAL MEETING October 4-7, 2023 • Vancouver, BC

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CR A F T

CNS CONNECTIOINS EDITOR Daniel J. Bonthius, MD, PhD Medical Director, Pediatric Neurology Levine Children’s Hospital

Child Neurology Synapses Evidence That Botulium Toxin Works for Pediatric Migraine “Botulimun toxin for pediatric migraine: A retrospective multisite cohort study.” Horvat DE et al. Pediatric Neurology 2023; 147: 68-71.

What the researchers did: Migraine headaches are a debilitating condition for many children and adolescents. Several pharmacologic agents, including topiramate, propranolol, and amitriptyline can help prevent migraine headaches for some pediatric migraine sufferers under some circumstances, but effective prophylaxis remains elusive for many patients.

Botulinum toxin (botox) injections are highly effective as a prophylactic agent for many adult migraine patients. The

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mechanism by which botox prevents migraine headaches is not clear, but likely reduces tension within injected muscles, thereby reducing production of inflammatory molecules and stimulation of painful neurotransmission. While the efficacy of botox against migraine headaches is firmly established for adults, this is not yet true for pediatric patients.

Only a few relatively small studies have assessed botox in pediatric migraine.

Therefore, a group of researchers in the military health care system conducted a retrospective multisite cohort study to examine the safety and efficacy of botox in adolescent patients with frequent migraine headaches.

What the researchers found: This study included 51 patients whose ages ranged from 13 to 17 years. The average age at first botox dose was 16 years. Most of the patients (86%) were female. The patients were having an average of 24 migraine headaches per month, and a large majority of patients (71%) had continuous headaches.

The patients had tried an average of two prophylactic medications prior to the injections, with a range of 0-14 medications. Following the injections, the great majority of the patients (69%) experienced at least a 50% reduction in headache frequency. The botox injections reduced the number of headache days per month by an average of 13.1 days.

Patients with continuous headache were especially improved, as 78% of them had complete resolution of their headaches. Only two patients in the cohort experienced adverse effects, and they were mild. One had post-injection neck soreness, and another developed a headache following the injections and had no improvement in headache days.

Most of the patients (67%) returned for repeat injections, suggesting that they appreciated the positive effects produced.

What the research means: This study found that botulinum toxin injections in adolescents with migraine substantially reduces the frequency of migraine headaches and the number of headache days per month. For many patients with continuous headaches, the botulinum toxin eliminated the headaches entirely. In addition, the study found that adverse effects of the treatment were few and mild. This provides some of the strongest evidence yet that botox can be a safe and effective treatment for adolescents with migraine. The study suffers from the fact that it was not randomized, prospective, or placebocontrolled. Clearly, a study with those attributes examining botox for adolescent migraine should now be done. •

Link to CNS Synapses Library

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CNS CONNECTIOINS EDITOR Daniel J. Bonthius, MD, PhD Medical Director, Pediatric Neurology Levine Children’s Hospital

Child Neurology Synapses Perinatal Ischemic Stroke Can Lead to Autism “Autism spectrum disorder in children with perinatal ischemic stroke varies by stroke type.” Wu CM, et al. Journal of Child Neurology 2023; 38: 513-517.

What the researchers did: Perinatal stroke, which occurs between 20 weeks gestation and 28 days of life, affects approximately 1 in every 2000 term newborns. As all child neurologists know, lifelong complications ensue from perinatal strokes. These complications commonly include cerebral palsy, cognitive impairment, epilepsy, and attention deficits. Autism spectrum disorder, which is a neurodevelopmental disorder characterized by restricted interests, repetitive behaviors, and impaired social

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interactions, is not commonly considered an outcome of perinatal stroke. However, both perinatal stroke and autism spectrum disorder are associated with language deficits and cognitive impairment. In addition, perinatal strokes can cause deficits in facial recognition ability, which underlies some of the social interaction problems of autism spectrum disorder.

Thus, the neurodevelopmental deficits that follow perinatal strokes can overlap considerably with the symptoms of autism.

In this study, a group of researchers from Boston Children’s Hospital examined the prevalence of autism spectrum disorder in children with perinatal ischemic stroke.

What the researchers found: The researchers conducted a retrospective study in which they reviewed all cases over a 13-year period of perinatal ischemic stroke at their hospital. The patients were aged at least 18 months at the time of their last follow-up visit. The patients were classified as having autism spectrum disorder if that diagnosis had been made by a neurologist, developmental pediatrician, neuropsychologist, or neurology nurse practitioner. Radiologic studies were reviewed, and the ischemic strokes were classified into the subtypes of venous or arterial. The likelihood of developing autism spectrum disorder following venous and arterial strokes were compared. The researchers identified 260 children with perinatal ischemic strokes.

Nineteen of these children (7.3%) were subsequently diagnosed with autism spectrum disorder. Whereas the rate of autism in the general US population is 2.3%, the data suggest that perinatal ischemic stroke substantially increases the risk of autism spectrum disorder. Of the 260 perinatal strokes, the majority (67%) were arterial strokes, while only a minority (33%) were venous. Nevertheless, most cases of autism occurred in patients with venous strokes, rather than arterial strokes.

In fact, the odds of developing autism spectrum disorder following a perinatal stroke were three times higher if the stroke was venous rather than arterial.

What the research means: Conventional wisdom suggests that autism spectrum disorder is genetic in etiology, even though, for most cases, no abnormal genes can be identified to explain it. The results of this study don’t change that. But the results do suggest that some cases of autism spectrum disorder are due to perinatal strokes. The study revealed that there is a three-fold higher prevalence of autism spectrum disorder in the perinatal stroke population than in the general US population. Thus, when discussing prognosis with the parents of infants with perinatal stroke, the possibility of autism spectrum disorder should probably be raised. The study further suggested that autism is much more likely to emerge if the perinatal stroke is venous, rather than arterial.

Why a venous stroke would more likely induce autism than an arterial one is unclear. The authors suggest that venous strokes often involve periventricular white matter and that autism symptoms may be due to dysfunction in that anatomic location. Whether that is true or not is unclear, but the three-fold greater risk of autism following a perinatal venous stroke versus an arterial stroke may provide an important clue regarding the biologic basis of autism. • Link to CNS Synapses Library

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CR A F T

CNS CONNECTIOINS EDITOR Daniel J. Bonthius, MD, PhD Medical Director, Pediatric Neurology Levine Children’s Hospital

Child Neurology Synapses Use of Lamotrigine or Levetiracetam During Pregnancy: No Adverse Effects on Infant Development “Neurodevelopment of babies born to mothers with epilepsy: A prospective observational cohort study.” Bromley RL et al. Epilepsia 2023; 64: 2454-2471.

What the researchers did: Pregnant women with epilepsy face a dilemma: should they expose the fetus to potentially injurious anti-seizure medications, or should they avoid antiseizure medications and run the risk of uncontrolled seizures? This cruel dilemma would not be necessary if pregnant women could be assured that their antiseizure medication poses little threat to the fetus. Unfortunately, for some antiseizure medications, this assurance cannot

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be given. Phenobarbital and valproate during pregnancy can adversely affect the offspring by reducing intelligence quotients, impairing language function, and increasing the risk of autism – not to mention valproate’s risk of neural tube defects. Likewise, topiramate appears to have neurodevelopmental consequences.

In contrast, lamotrigine and levetiracetam appear to be relatively safe during pregnancy. Except for the case of high dose lamotrigine, prenatal exposure to lamotrigine and levetiracetam have not been associated with increased risk of major congenital anomalies. However, whether lamotrigine and levetiracetam during pregnancy adversely affect

neurodevelopment is unknown. To address this issue, a group of researchers in the United Kingdom examined the neurodevelopmental status of young children whose epileptic mothers were treated with lamotrigine or levetiracetam monotherapy during pregnancy. For this prospective longitudinal study, 401 pregnant women with epilepsy were recruited from 21 hospitals across the UK. Women with epilepsy on antiseizure medications (monotherapy or polytherapy) and those on no antiseizure medication were included. The possibility of a relationship with dose was investigated for the two most prescribed anti-seizure medications, which were lamotrigine and levetiracetam. When the infants were 12 months old, the Vinelands Adaptive Behavior Scale, which assesses infant development in communication, daily living, socialization, and motor development was completed. At 24 months, the Bayley Scales of Infant and Toddler Development, which assesses cognition, language, and motor skills were completed.

What the researchers found: When the infants were one year of age, 18% of the mothers with epilepsy were concerned about their child’s development, especially with regards to language and motor skills. However, the frequencies of these concerns were not different in the mothers who took an anti-seizure medication and those who did not. Likewise, scores on the Vineland Scales were comparable across all of the

exposed and unexposed groups when the infants were tested at one year.

Similarly, when Bayley developmental assessments were conducted at two years, there were no significant differences in the mean cognitive, language, or motor development scores among the lamotrigine-exposed, levetiracetamexposed, and unexposed groups. No evidence of a dose-related adverse effect on development was noted for either medication. Many of the infants continued to be exposed to the antiseizure medications during breastfeeding.

However, no negative effect of the continued exposure was detected on cognitive, language, or motor development.

What the research means: This research study demonstrates that lamotrigine and levetiracetam, when taken as monotherapy during pregnancy, do not adversely affect the developmental trajectory of infants during early life. Thus, the study provides reassuring evidence that lamotrigine and levetiracetam are likely safe for women to take during pregnancy. This is welcome news but must be accepted with the caveat that the study was not powered sufficiently to detect small changes. Nevertheless, this study allows pregnant women with epilepsy to freely take lamotrigine or levetiracetam, confident that treating their epilepsy will not substantially endanger their babies’ neurodevlopment. •

Link to CNS Synapses Library

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CO M M U N I T Y

Amy Brin, MSN, MA, PCNS-BC CEO/ Executive Director, Child Neurology Foundation

Link to CNF Website

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Child Neurology Foundation Navigating Post-Trial Dilemmas in Pediatric Neurology: A Symposium Recap In the child neurology community, our path is a blend of science, compassion, and a tireless quest for improved outcomes for children living with neurological conditions. This intricate dance takes a profound turn when we reach the intersection of many evolving clinical dilemmas, including clinical trials. It’s this juncture that CNF’s symposium, “Clinical Trials in Pediatric Neurology: Dilemmas After the Trial,” sought to illuminate. This was the second year CNF’s symposium focused on clinical trials due to the influx of innovation hitting our disease space, with 2022 focusing on some challenges child neurologists and families face in early clinical trial engagement.

The CNF symposium was again the opening symposium for the CNS 2023 convention and convened expert stakeholders to explore the intricacies that follow the conclusion of clinical trials in pediatric neurology. This interactive symposium provided an inclusive platform for dialogue, offering insights from the perspectives of families, multidisciplinary clinicians, and investigators.

One participant reflected, “An amazing

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symposium that encouraged open and honest communication about clinical trial issues and how we can work together as a community to address them.”

The symposium commenced with my opening remarks, reflecting on the history of CNF’s symposium partnership with CNS. While there was initial trepidation about attendance at a symposium which blends the science and art of medicine, for eight years we have witnessed sold out events and calls for increased capacity.

As a community, you have confirmed our hypothesis that child neurologists are eager for educational opportunities which hold the space for you to learn from multi-stakeholders on emerging topics, while exploring the nuanced relationships you share with patients and their families.

CNF’s symposiums illuminate assumptions stakeholders hold towards one another, and through its curriculum, provides opportunities to move towards shared understanding that can lead to impactful change in clinical practice.

The symposium continued with Betsy Pilon, parent and Executive Director of Hope for HIE, offering insights into the

aftermath of clinical trials, particularly when therapies fell short of expectations.

Betsy’s heartfelt narrative illuminated the emotional and financial burdens on families and underscored the critical need for ongoing support, even when trials conclude without success. These real-life accounts emphasized that the dilemmas related to clinical trial involvement do not just end because the trial does.

Next up was Scott Perry, MD, who delved into the principal investigator’s (PI) perspective. Through firsthand experience and anecdotes, Dr. Perry and members of his clinical team discussed the complexities involved in getting therapies approved, issues with insurance coverage, and financial challenges faced by patients and families. Importantly, the symposium underscored the need for ongoing communication between investigators and referring providers to ensure all remain informed about the trial’s results and progress.

Michael Storey, PharmD, MS, then leaned into the FDA approval process and post-approval considerations. He touched upon the challenges related to equity and access to therapies, under-represented subpopulations, and the need to carefully interpret and extrapolate data. Ethical considerations, novel therapies, and the associated uncertainties were thoughtfully dissected.

Throughout the symposium attendees engaged in activities aimed at gleaning insights, identifying key takeaways, and promoting peer learning. It was moving to see participants reflect on discussions and consider implications for their work.

Finally, Erika Augustine, MD, MS, wrapped up the symposium with her personal reflections. With an eye toward the future, Dr. Augustine noted that the symposium wasn’t just a one-off event; it was part of an ongoing dialogue, signaling our commitment to addressing these critical issues as a community.

The challenges in pediatric neurology are complex, but they are not insurmountable. However, to address them, we must first be honest that they exist. Holding space for multi-stakeholder learning and vulnerable peer discussions – like the CNF symposium – is one intervention that signals traditionally didactic, physician to physician approach to CME is not always the most appropriate approach for today’s clinicians. We must abandon the assumption that physicians must have all the clinical answers, be precisely up to date on research opportunities and findings, address psycho-social needs, all while completing administrative tasks within a 15-minute visit. We have to be okay to be vulnerable and talk about our pain points, our lingering doubts, and our gaps in understanding. We have to admit – whether as a family member or a physician – we are being asked to do more with less, and it is not sustainable.

We have to be okay to ask for help and know that is the new norm. We have to know it is not them vs. us. It is we. We are all child neurology – and if we can look to the future together, we can harness the insatiable truth that we are more than any dilemma we face. •

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P E CN PROFESSORS & EDUCATORS OF CHILD NEUROLOGY

PECN PRESIDENT Soe Mar, MD President Professors & Educators of Child Neurology

May Our Beautiful Autumn Bring World Peace!

Greetings PECN Members First, let us be thankful that we had a productive and enjoyable Child Neurology Society Annual Meeting in early October.

We, child neurologists, are a closely knit community. It was so nice to see friends, mentors, mentees, and colleagues at the CNS meeting. Second, let us briefly reflect that we all are sufficiently healthy and happy enough to continue our extremely important work for the next generation by training young physicians and treating young patients.

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Child Neurology Society | Fall 2023

We have many important updates for you: The boards of CNS and PECN, both with long and rich histories, have now merged after tabulating your votes. As a result, our resources will be consolidated, which will reduce administrative costs and redundant support staff, as well as the need for separate elections for PECN BODs, extra fees, and restrictions for PECN membership.

Last year, PECN started working with CNS to advocate for increased opportunity for committee and board representation by any qualified child neurology member for openings on important committees of national organizations. This is especially important where there has been historical underrepresentation by child neurologists. We have stressed the need for open public solicitations for these positions and increasing transparency, diversity, equity, and inclusion for our important educational organizations.

We have begun to see the results.

Some of you have heard the excellent presentation regarding the development of a national “standardized” child neurology genetic curriculum led by Kuntal Sen and his colleagues. Please stay tuned, as this extremely important curriculum will be available for all of us over the next few months, with the plan of fully integrating this curriculum by the next annual meeting.

Katherine Xixis and Adam Wallace of PECN have been leading efforts to recruit chairs of educational subcommittees over the past few months through open nomination, followed by the BOD selection. Thank you and kudos for accepting the chair positions to Danny Rogers and Rachel Gottlieb-Smith as co-chairs of the PECN Residency Subcommittee, Stephen Deputy as the chair of Medical Student Subcommittee, and Margie Reams as the chair of Match Subcommittee.

Please be on the lookout for solicitations for membership of several educational subcommittees.

Finally, please feel free to reach out to me via email at mars@wustl.edu if you have any topics and ideas related to education that you would like to discuss.

Warm and kind regards. •

Link to PECN Website

Child Neurology Society | Fall 2023

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We look forward to seeing you...

Mark Your Calendar for Future Meetings

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