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Collaborative projects between ICNA and CNS continue to expand. These programs focus on improving infrastructure in different countries in Africa, the Caribbean and Latin America, and include donations of EEG machines, creation of safe EEG laboratories, long-term training of EEG technologies and creation of epilepsy surgery programs (El Salvador, Central America). These programs improved availability of neurodiagnostic tests and specialized surgeries, such as hemispherectomies, temporal lobectomies of implantation of VNS systems for children living in poor resource areas. The key to such initiatives is the ongoing development, support and sustainability through continued interaction with the centres. In collaboration with the CNS the ICNA intends to strengthen these programs to ensure that they become independent and ideally can widen their capacity to other local centres.
If you would like to help the ICNA in its mission and support its activities, you can make a donation to the activity/project of you choice Your contributions will help us change many lives.
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Epilepsy is well recognised worldwide as a common, complex neurological disorder which places a significant burden on people and society. Uncontrolled seizures severely impact a person’s independence and quality of life and place enormous costs on the healthcare system. In recognition of this challenge the province of Ontario in Canada developed a network of comprehensive epilepsy centers where people can be assessed for available epilepsy treatments including potentially curative epilepsy surgery. They also created and disseminated evidence based clinical guidelines to improve epilepsy care throughout the province. Although this was a significant achievement, unfortunately it wasn’t enough. There was still a need to train frontline health care providers to diagnose and treat epilepsy and also to recognise when to refer patients to a comprehensive epilepsy center.
Project ECHO [Extensions for Community Healthcare Outcomes] has been shown to be a creative answer to this knowledge translation gap. Project ECHO was conceptualized and developed in 2003 by Dr Sanjeev Arora in Albuquerque New Mexico, to increase the capacity for management of patients with hepatitis C throughout that state ( Arora et al 2011). Project ECHO® is an innovative model for medical education that uses ZOOM video-conferencing to connect specialist multidisciplinary teams at academic health centres to community healthcare providers (CHCPs). Using didactic and case-based learning, each ECHO session fosters knowledge among CHCPs that can be translated to the care of their patients. In this way, ECHO creates a knowledge network to move knowledge, instead of patients and expedites the timely delivery of care, where it’s needed.
From 2013 to 2016 the Ontario regionalized system of comprehensive epilepsy care was organized and operationalized by the Ontario Ministry of Health [MOH] in a remarkable partnership with epilepsy care providers, hospital administrators, community epilepsy agencies, and epilepsy patients and their families. Once the system was up and running the MOH, working with the same partners, moved to create Project ECHO Epilepsy across the Lifespan in order to translate best practices of epilepsy care being delivered in the Regional and District Epilepsy Centres in Ontario to front line health care providers throughout the Province [see https://oen.echoontario.ca/ . The ECHO model was seen as an ideal solution to address the needs of people living with epilepsy in Ontario, now even more relevant in 2020, because of the disruptions in chronic disease health care networks by COVID 19.
Project ECHO Epilepsy across the Lifespan uses the same ECHO model as developed by Dr. Arora, described above. It is a virtual, technology based, collaborative partnership between community health care providers and epilepsy specialists that utilizes case-based and didactic learning to enhance care for people living with epilepsy. The adult and pediatric curricula are delivered to community partners [spokes] by hub teams in Pediatric and Adult District or Regional Epilepsy centres across Ontario. Each interprofessional hub is composed of an epileptologist, epilepsy nurse practitioner, social worker, neuropsychologist, community agency representative, and pharmacist connected to the local hub. This whole MOH-funded Project ECHO Ontario: Epilepsy Across the Lifespan system is administered by a central hub, The Hospital for Sick Children in Toronto.
ECHO sessions are interactive, safe learning environments, where participants present patient cases, ask questions and share best practices. Attending ECHO enables health care providers to gain the skills necessary to manage epilepsy effectively and safely. ECHO sessions usually happen during lunch hour, once a week with access via smart device or laptop. They are open, free of charge to health providers in Ontario.
The goal of the project is to build capacity in the community to diagnose and manage epilepsy appropriately, as early as possible. This is in order to reduce unnecessary emergency visits or hospital referrals and life threatening events due to status epilepticus. Benefits of the program include caring for patients closer to home, improved outcomes, patient satisfaction and quality of life. Health care providers have the opportunity to learn about best practices in epilepsy care, including the curative option of epilepsy surgery.
The program has been now been running for 3 years and has received a high level of interest from community neurologists, pediatricians and family physicians. Two thirds of the participants were from these disciplines with the balance consisting of registered nurses, nurse practitioners, pharmacists, social workers, epilepsy educators and psychologists and other allied health professionals. Feedback has been encouraging, as there has been a significant positive change in knowledge, self-efficacy, comfort level, and practice with respect to epilepsy care amongst learners. Providers who presented cases also commented that there was an improvement in the severity or impact of their patient’s illness after implementing recommendations made during an ECHO session. Various types of epilepsy are increasingly recognized as genetic conditions with a significant proportion caused by pathogenic variants in single genes. These are detectable using next generation sequencing gene panels in 15-30% of people living with epilepsy. The Ontario MOH, continuing its partnership with epilepsy care providers throughout Ontario has just announced a new Ontario Epilepsy Genetics Testing Program (OEGTP). All epilepsy genetic testing, which until now has been sent out of country, will be repatriated and performed in the Division of Molecular Diagnostics at the London Health Science Centre in Ontario. In this way, evidence based epilepsy gene panels will be provided for carefully selected epilepsy patients in Ontario. Physicians who are approved to order these genetic tests for epilepsy include epilepsy specialists and neurologists affiliated with the District and Regional Epilepsy Centres throughout Ontario, Neurologists in the Province with at least six months of training in epilepsy and EEG and geneticists. As well, Project ECHO Epilepsy across the lifespan will inform and educate additional care providers by providing a Continuing Medical Education (CME) certified epilepsy genetics curriculum to Family Doctors, Paediatricians and Community Neurologists . On completion of the course these CHCPs also will be approved by the MOH to order genetic testing for their epilepsy patients. The development and evolution of Project ECHO: Epilepsy across the lifespan in Ontario is illustrative of the breadth, depth, compelling nature, and flexibility of the Project ECHO model as applied to epilepsy knowledge translation. The ECHO model has demonstrated effectiveness in expanding knowledge, self-efficacy and practice change in the delivery of adult and pediatric epilepsy care in Ontario. ECHO shows great promise as a tool to demonopolize epilepsy knowledge and enhance the care of all patients with epilepsy in their own communities. Finally Ontario continues to advance its world leadership in epilepsy care, first with the development and funding of a provincial comprehensive care system, then the creation of Project ECHO: Epilepsy across the lifespan, and most recently the development of OEGTP and our new Project ECHO epilepsy genetics curriculum.
Kevin Jones and Carter Snead
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We are pleased to inform our ICNA members that, following our recent election, Prof. Pratibha Singhi has been elected as the next President Elect of ICNA.
Her 4-year term as ICNA President will be from the ICNA Congress in Oct. 2022 to 2026. We wish her our sincerest congratulations and strong support.
There were more votes cast in this election than in any prior ICNA election and both candidates received more votes than any previous presidential candidate.
Please join me in thanking both Prof. Pratibha Singhi and Prof. Charles Newton for running and congratulate them on their excellent showing internationally, reflecting the high esteem in which they are both held.
Ingrid Tein MD
Chair, Nominating Committee
The International Child Neurology Association
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It is with great sadness that the ICNA announce the passing of Kenneth Swaiman, MD, the founder and first president of the Child Neurology Society, Child Neurology Foundation, and the Professors of Child Neurology, original author and continuing editor of Swaiman’s Pediatric Neurology, and founding editor of the journal, Pediatric Neurology.
IN MEMORIAM: KENNETH FRED SWAIMAN, MD
(November 19, 1931 - September 18, 2020)
Ken Swaiman was a visionary who has played a universally recognized, pivotal and remarkable role in the development of child neurology. He initiated the founding of the Child Neurology Society, the Professors of Child Neurology and the Child Neurology Foundation, and the publication of what is regarded as the primary textbook in the field, Pediatric Neurology: Principles and Practice. He began the journal, Pediatric Neurology, one of the major pediatric neurological journals and served as its editor from 1984-2012. For these and many other accomplishments, Ken was honored by the Child Neurology Society at the 2017 Legacy Reception.
Ken, although born in St. Paul (1931), was raised in Minneapolis, Minnesota. His Lithuanian parents, before meeting, separately immigrated to the United States, met in St. Paul, and moved to Minneapolis. Ken attended the University of Minnesota, earning degrees in Liberal Arts (Magna Cum Laude, 1952), Science (1953), and Medicine (1955) and then joined a rotating internship at the Minneapolis General Hospital (1955-56), followed by a Pediatric residency and Chief residency at the University of Minnesota Hospitals (1956-58). This was followed by two years as Chief of Pediatrics at a US Army Hospital (Ft. McPherson, GA). He returned to Minnesota where he was an NIH-sponsored ‘Special Fellow in Pediatric Neurology’ (1960-63) under the mentorship of Dr. A.B. Baker, one of the founders of the American Academy of Neurology (1948). Ken received board certifications from the American Board of Pediatrics (1960), the American Board of Psychiatry and Neurology (1966) and the American Board of Psychiatry and Neurology, with Special Competence in Child Neurology (1969).
Ken joined the Pediatric and the Neurology faculties at Minnesota (1963) and within a decade became a full Professor in both departments. He was Director of the Pediatric Neurology Training Program and Director of Pediatric Neurology (1972), serving in those capacities until 1998. During his career, Ken belonged to 20 professional organizations. He engaged in basic science research: GABA and phenylalanine metabolism, metabolic abnormalities in pediatric neuromuscular conditions, the effects of malnutrition on the developing brain, and clinical disorders, including acid maltase deficiency, sea blue histiocytosis and the effects of iron and other metals on cerebral energetics. Ken’s interest in clinical teaching and research investigation, and transmitting this information to the trainees in his program and worldwide, was always in the forefront of his thoughts. He held leadership positions in key child neurology organizations, including the Child Neurology Society (CNS, First President 1972-1973), International Child Neurology Association (Executive Committee 1970-1979), Professors of Child Neurology (PCN, First President 1978-80) and the Child Neurology Foundation (CNF, First President 2000-2003). Ken was also on many National Institutes of Health Study Sections and has shared his knowledge as a visiting professor giving over 50 special lectures throughout the United States and in many countries worldwide.
Trainees and Awards. Ken served on 15 editorial boards of major scientific journals. He also served as a board examiner for the American Board of Psychiatry and Neurology. He has received numerous awards, with the three most prestigious being the Hower award (1981), the highest award given by the CNS to an individual who is highly regarded as an outstanding teacher and scholar, and additionally, has given a high level of service to the CNS, the Founder’s Award at the 25th anniversary meeting of the CNS (1996), and the American Academy of Neurology Lifetime Achievement Award for Neurologic Education (2005).
During his tenure at Minnesota, Ken trained over 80 child neurologists and he felt that contact with his residents was one of his prime motivating forces for beginning all of the organizations that he started. He felt that the role of teacher and mentor was the most important responsibility that a faculty member can have. His trainees came from all over the world and went on to provide continuing education in the U.S. and in their home countries.
Child Neurology Society. The first Accreditation Council for Graduate Medical Education (ACGME) specialty board devoted to individuals with neurological and psychiatric disorders, the American Board of Psychiatry and Neurology (ABPN), was established in 1934. Another 34 years elapsed before Child Neurology was recognized as a distinct neurology subspecialty (American Board of Psychiatry and Neurology, with Special Competence in Child Neurology, 1968). Having long recognized the uniqueness of child neurology, Ken gathered together a small group of senior Midwest pediatric neurologists in 1971 and the following year, he founded the CNS (1972), holding the first meeting at the University of Michigan. There, the Society was incorporated, by-laws were created, an Executive Board was formed, and plans were made to hire administrative staff. The formation of the CNS was a major force in the expansion of Pediatric Neurology training programs, and many more medical students and residents decided to pursue a career in pediatric neurology.
Professors of Child Neurology. The Association of University Professors of Neurology (AUPN), one the principal organizations involved in the training of neurologists, held its first meeting in 1968 to address training, legislative, workforce and research funding issues and to serve as a liaison with many organizations. Realizing the importance of having a parallel organization for academic child neurologists, Ken founded the PCN with the help of Bruce Berg (1978), with Ken serving as its first President. The PCN meets at the CNS annual meeting and serves many roles including support of training programs, program directors, coordinators and residents, as well as serving as the interface with multiple other organizations (CNS, ACGME and ABPN). Ken was a tireless advocate for improving the quality of pediatric neurological education, the advancement of the field, and the means to increase the knowledge and capability of pediatric neurologists.
Child Neurology Foundation. Ken founded the CNF in 1999, recognizing the need to support the outreach of child neurologists and support of families and children with neurological disorders. He was the CNF’s first President and he was instrumental in securing the resources to start the organization’s Researcher in Training and Scientific Awards. Such was the trust in the future of the Foundation that significant industry support was obtained through Ken’s and Roy Elterman’s efforts. More recently, the CNF redirected its efforts to focus on the needs of families and children, and it conducts unique symposia at the annual CNS meeting.
Pediatric Neurology: Principles and Practice. The first textbook solely devoted to the entire field of Child Neurology appeared in 1845 (Ludwig Mauthner). Over the ensuing century, additional monographs were written by Bernard Sachs (1895), James Taylor (1905), Martin Theimich and Julius Zappert (1910), Ludwig Bruns (1912), George Peritz (1912), Bronson Crothers (1926), and Frank Ford (1937). For a variety of reasons, comprehensive texts devoted to the field did not appear until that of John Menkes (1974), the first edition of the book by Ken Swaiman and Frank Wright (1975) and the textbook by Jean Aicardi (1992). The book, “The Practice of Pediatric Neurology,” edited by Ken and Frank Wright and the subsequent 1982 edition were internationally acclaimed. Ken then became sole editor of the next edition (1989) when the title changed to “Pediatric Neurology: Principles and Practice,” with subsequent editions published in in 1994, 1999, 2006, 2012 and 2017. As the book grew in size and coverage, additional editors joined Ken: Steve Ashwal (1999), Donna Ferriero (2006), Nina Schor (2012), and Andrea Gropman, Richard Finkel, Phillip Pearl, and Michael Shevell (2017). The growth of the discipline is documented by the fact that the number of pages and chapters has grown greatly: from 40 chapters/1,082 pages in 1975 to 170 chapters in 2017 (online version of >3,500 pages; shortened print version of 1432 pages).
The journal, ‘Pediatric Neurology’. Although there were several journals that covered neurological disorders, it was in 1951 that the first issue of Neurology, the official journal of the American Academy of Neurology (AAN) appeared. Then, in 1975, the American Neurological Association founded the Annals of Neurology. Shortly thereafter and with a certain degree of debate and controversy, the CNS became co-sponsors of the Annals, with all society members getting a subscription to the Annals as part of their dues. Ken described in detail the process that led to his decision to develop a journal solely devoted to child neurology and within several years (1985), “Pediatric Neurology” appeared. The journal has grown remarkably, receives many contributions from all over the world and has a high impact factor. Ken continued as Editor-in-Chief until 2012 and in 2013, he turned over this position to Steve Roach who has maintained the high standard of the journal, with a steadily rising impact factor.
The word ‘retirement’ was not in Ken’s lexicon. He continued to attend CNS meetings, maintained close contacts with leaders of the CNF and was Editor and co-author of chapters in the 2017 edition of the reference text that he began
More than any other modern-day neurologist, Kenneth Swaiman has led the way in establishing the field of child neurology. He has served as the most lustrous academic beacon in the CNS. To hundreds of academicians, he has shown the way in patient care, teaching, research and scholarship and, in that way, has bettered the lives of tens of thousands of children with neurological disorders. No one has come close to Ken in establishing the academic origins and growth of Child Neurology. Through his years of tireless work and productivity, Ken has consistently exuded great warmth, a dazzling smile, and an infectious laugh. He has inspired countless others to reach for lofty goals, inspired by Ken’s many legacies.
Ken and his wife of 35 years, pediatric neurologist Phyllis Sher, alternated their residences between Minneapolis and Tucson. Phyllis was a past member of the Executive Committee of the CNS, taught at the University of Miami Medical School, the University of Minnesota Medical School and did research at the NIH. While in Arizona, she taught at the University of Arizona School of Medicine, returned to her artistic background and is an accomplished painter. Ken received unswerving support from Phyllis during his last of several illnesses, sharing their deep love as Ken reflected on his life, a life so well lived. In addition to Phyllis, Ken is survived by children, Lisa Swaiman (Jim Grossman), Jerrold Swaiman, Barbara Swaiman (Mark Franklin), and Dana Hoberman (Bruce); and grandchildren, Isaac Swaiman, Sarah Grossman, Ethan Swaiman, Danielle Swaiman, Sawyer Franklin, Ryan Franklin, Jordan Hoberman and Benji Hoberman; and great grandson Everett Swaiman.
Submitted by longtime colleagues and friends,
Stephen Ashwal, MD
N. Paul Rosman, MD
Source:Child Neurology Society,United States