With the sad news in ICNAPedia of the passing of Dr Masaya Segawa, close upon earlier news of those of Dr Yukio Fukuyama’s and one of ICNA’s mentors, Dr Heinz Prechtl’s, ICNA has lost two more among the dwindling number of its founding members. As a (still) survivor, let me honor their fundamental contributions to our field, and allow me a few personal memories of Drs Fukuyama and Segawa dating back to Toronto 1975. Both these Japanese colleagues epitomize the clinician-scientist, today an endangered species because their important discoveries came from close observation of their patients, Dr Fukuyama’s from the vantage point of academe—The Women’s Medical College in Tokyo, Dr Segawa’s from the private practice of neurology with the eye of a researcher in whom every new patient provides the potential opportunity for a new discovery.
Dr Yukio FukuyamaToday’s child neurologists all know of Dr Fukuyama because of his description of the Fukuyama muscular dystrophy1, perhaps the first recognized muscle/brain disease. They will be aware of his multiple contributions to childhood epilepsy, in particular infantile spasms, and to many other neufologic disorders of children. They may not appreciate, if they come from the West, that Dr Fukuyama was the father of child neurology first in Japan, then Asia. They are unlikely to be aware that he founded the pioneer Japanese journal of child neurology, then Brain and Development, which he edited for many years. His modesty belied his powerful world wide influence for which we are all grateful.
My first encounter with Dr Segawa was the five abstracts he submitted to the program committee of the first International Child Neurology Congress in 1975. What to do with such a prolific member whose name was new to me? It is to ICNA members that he presented the first report of dystonia with diurnal fluctuations2, now DTY 5a or Segawa disease. It is Dr Ouvrier from Australia who put it on the world map with his 1978 report of 3 cases in the 1978 Annals of Neurology3, in which he credits Dr Segawa with his 1976 princeps report of 9 Japanese cases, likely those he told us about in Toronto. A dramatically treatable formerly disabling neurologic disorder: what a unique and magnificent contribution! Dr Segawa attended every ICNC and many neurology meetings in the USA and elsewhere, often with his charming colleague Dr Yoshiko Nomura.
Did you know that, a long-time scholar of brainstem and sub-cortical nuclei and their neurotransmitters, Dr Segawa had long-standing novel ideas about the 
Dr Masaya Segawaphysiology of sleep and of autism? He too was overly modest. He, with his violist wife, was the guardian of his father’s ancestral Japanese house with paper walls, a tea house, and a small stream bubbling through a moss and bamboo garden, an oasis of peace and silence sited beside his clinic, right in the middle of bustling Tokyo which thankfully escaped end-of-World War II American bombing.
When I was in training and a fledgling teacher of child neurology, we were all imbued with Dr Prechtl from Groningen in the Netherlands’ observations of the complex behavioral repertoire of the newborn, and later the fetus. He came to his pioneering research from having studied ethology with his award-winning mentor, Nobelist Konrad Lorenz, famous for his studies of maternal imprinting in newly-hatched goslings. Prehtl’s work in human neonates spawned neonatal child neurologists in Paris, London, Canada, and elsewhere to realize that babies are not insensate blobs and deserve respect and protection from pain.
Heinz FR PrechtlIt is Dr Prechtl—whom I never met—who spurred me to bring my 4 week old younger son Peter, dressed in a red terry jumpsuit, to demonstrate to the 2nd year class of Einstein students the behavioral repertoire, including supported ambulation, of the infant. ICNA has been blessed from the start—and still is—with outstanding clinician-investigators. May the deluge of unyielding computerized reports that dictate what they are to see not kill the desire of young doctors to observe and record what the clinic privileges them to observe on their own and share with colleagues around the world.
As well known, many of the truly revolutionary scientific discoveries, from Galen to Lister, Semmelweiss, Pasteur, and others were the gifts of individual patients to their astutely observing caring physician, not the statistical products of meta-analyses of compiled international case series, or the discovery of the -nth mutation increasing slightly the risk of some behaviorally-defined syndrome, however important for treatment such endeavors they may be.
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Isabelle Rapin This email address is being protected from spambots. You need JavaScript enabled to view it.This email address is being protected from spambots. You need JavaScript enabled to view it. +1 845 757 5770 4905 Route 9G, Tivoli NY 12583, USA |
Ref:
1. Y. Fukuyama, M. Kawazura, H. Haruna. A peculiar form of congenital progressive muscular dystrophy. Report of fifteen cases Paediatr Univ Tokyo, 4 (1960), pp. 5–8
2. Segawa M, Hosaka A, Miyagawa F, Nomura Y, Imai H. Hereditary progressive dystonia with marked diurnal fluctuations. Adv Neurol 1976;14:215–33
3. Ouvrier, R. A. (1978), Progressive dystonia with marked diurnal fluctuation. Ann Neurol., 4: 412–417. doi: 10.1002/ana.410040505
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We are deeply saddened to report that Professor Masaya Segawa, MD, PhD, the director of Segawa Neurological Clinic for Children, Tokyo, Japan, took his last breath at 18:15 on December 14, 2014, at age of 78 year-old from a disease to which he fought till the end courageously. His extreme courage is based on his belief as a physician, sincere thought for life and his noble heritage.
He was an exceptionally hard worker, and a man with the kindness, warm heart,a humor and a beautiful smile. His contribution in the medical field and warm friendship to all of us will be remembered for a long time.
Dr Segawa's discovery of the condition "Hereditary progressive dystonia with marked diurnal fluctuation" in 19761, stands among the most important modern contributions to child neurology. Dr. Segawa,Dr. Yoshiko Nomura, and their colleagues have made many more important contributions to child neurology including sleep disorders, autism and movement disorders.
Dr Masayo Segawa (1882-1962) who made the important observation2 that neurological symptoms in breast-fed infants disappeared with mixed feeding, probably one of the earliest reports on "infantile beriberi" was the grandfather of Dr Masaya Segawa. Dr. Segawa’s great-grandfather, Dr. Masatoshi Segawa (1856-1920), was the Dean of Miyagi Medical School, a Professor at Chiba Medical School, and the founder of Koutou Hospital for children in 1899 and of Segawa Children’s Hospital at Ochanomizu in 1905. Dr. Masaya Segawa’s father, Dr. Isao Segawa (1905- 1984) was also a distinguished paediatrician3.
In 2010, the ICNA conferred Honorary Membership on Dr Masaya Segawa and he has been a member of the ICNA Executive Board since 2004
Yoshiko Nomura, MD, PhD
Assistant Director
Segawa Neurological Clinic for Children
2-8 Surugadai Kanda Chiyodaku
Tokyo 101-0062 Japan
TEL 81-3-3294-0371
FAX 81-3-3294-0290
E-mail This email address is being protected from spambots. You need JavaScript enabled to view it.
E-mail This email address is being protected from spambots. You need JavaScript enabled to view it.
References:
1. Segawa M, Hosaka A, Miyagawa F, Nomura Y, Imai H. Hereditary progressive dystonia with marked diurnal fluctuations. Adv Neurol 1976;14:215–33
2. Segawa Y. Nervous symptoms in a breast-fed infant which disappeared with mixed feeding. Zika-Zasshi 1916;189
3. Ouvrier RA. Japanese contributions to child neurology - an international perspective. Brain Dev. 2012 Jan;34(1):2-7
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Dear Colleagues
We are delighted to invite you to the Commission on African Affairs (CAA) and Internaonal League Against Epilepsy (ILAE) Epilepsy Conference, to be held in the beauful city of Durban at the Maharani Hotel, situated on Durban's Golden Mile, from the 24 to the 25 March 2015. Durban situated on South Africa's east coast, is renowned for its warm beaches, natural heritage and diverse mix of cultures. We hope that this will be an interesng, clinically relevant meeng.
The one and a half day meeng consists of a half day praccal EEG workshop and a full day lecture programme. The theme of the meeng is “Approaches to Epilepsy across the ages. New understandings, essenal updates and good pracce recommendaons”.
The scienfic programme will cover topics relevant to paediatric and adult epilepsy and includes a basic sciences, neurophysiology and neuroradiology component. We have a presgious faculty of respected internaonal and local speakers all experts in their fields. The CAA is the ILAE regional group for Africa and aims to run regular educaonal workshops in Africa.
The 2015 Epilepsy meeng sees a historic collaboraon with the 12th Internaonal meeng of the Society of Neurosciensts of Africa (SONA) and will precede Africa's premier neuroscience conference. This will provide the ideal pla7orm for cross‐pollinaon of clinicians (paediatric neurologists, neurologists, psychiatrists and neuro‐technologists) with basic neurosciensts from across Africa and abroad, to showcase advances in the field of Epilepsy.
We invite individuals and organisaons with an interest in Epilepsy, including: neurology and paediatric trainees, clinical neurologists, paediatricians and psychiatrists, neuro‐technologists and Epilepsy nurses. We will be offering 10 bursaries to both local and internaonal trainees to cover flights, accommodaon and registraon fees. This will be based on the merits of an abstract submi;ed by the applicant (see website for bursary applicaon procedure).
The registraon form and details of registraon fees for other delegates can be found at www.sona2015.com. We look forward to meeng you in Durban in 2015. Best Wishes Organising Commiee ‐ Commission on African Affairs (CAA) and Internaonal League Against Epilepsy (ILAE) Epilepsy Conference
We look forward to meeng you in Durban in 2015.
Best Wishes
Organising Commiee ‐ Commission on African Affairs (CAA) and Internaonal League Against Epilepsy (ILAE) Epilepsy Conference
ORGANISING COMMITTEE:
Dr Rajeshree Govender
Dr Ansuya Naidoo
Professor Jo Wilmshurst
CAA and ILAE Epilepsy Conference 2015 Convenor
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OMICS-ETHICS Research Group at the University of Montreal would like to invite you to participate in an anonymous web-based questionnaire addressing neurologists' views about the potential use of genomic testing, in particular Whole-Genome Sequencing (WGS) in their clinical practice, and the return of the results of such a test to patients.
Your participation is important, whatever your specialty in neurology, whether or not you already used genomic testing in your practice, whether or not you agree with such a use, and independently of your level of expertise in genetics.
Genomic diagnostic tools are currently being developed in various fields of neurology and their implementation into some clinical settings has already begun. Yet, there is no study aimed at assessing neurologists' perspectives towards the implementation of such a technology in their practice, and the scientific as well as the ethical challenges it can raise. It is very important to document and give due consideration to your views on such topics.It should take you 10 minutes to fill in the online questionnaire.
Please click on the following link and use the password "neuro" to access the online survey and to obtain more information about our study:
http://www.medsp.umontreal.ca/irspum_db/wgs
We kindly ask for your assistance in forwarding this message to your colleagues (neurologists).
Thank you in advance for your valuable contribution.
Béatrice Godard
OMICS-ETHICS Research Group
University of Montreal
Department of Social and Preventive Medicine
7101, av. du Parc, Montréal
This email address is being protected from spambots. You need JavaScript enabled to view it.<mailto:This email address is being protected from spambots. You need JavaScript enabled to view it.;
www.omics-ethics.org
Tel.: 514 343-6111, # 44036
This research is conducted by the Omics-Ethics Research Group, University of Montreal, Canada. You can find more information about NGS such as Whole-Genome Sequencing by clicking on the Glossary button on the bottom of the pages of this questionnaire .
Disclaimer: This announcement is made by the ICNA on behalf of the OMICS-ETHICS Research Group University of Montreal. The announcement or the research linked to is not financially supported by or in any way endorsed by the ICNA, nor is any implication of the same intended by OMICS-ETHICS Group, University of Montreal. A fee has not been paid to the ICNA for providing this announcement
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Since August 2014 there has been several reports in the US and Canada of children presenting with mostly focal limb weakness following recent respiratory tract infection and associated significant grey matter changes on spinal MRI.
The Centers for Disease Control and Prevention (CDC) is working closely with the Colorado Department of Public Health and Environment (CDPHE) and Children's Hospital Colorado to investigate a cluster of nine pediatric patients hospitalized with acute neurologic illness of undetermined etiology. The CDC have also put out a HAN (Health Alert Network) Advisory with guidance about reporting cases to state and local health departments.
13-year-old Will Cornejo of Lone Tree, Colo., recovers at Rocky Mountain Hospital for Children in Denver from what doctors suspect is enterovirus 68Dr Ann Yeh, University of Toronto says that over the last several weeks, the Hospital for Sick Children, in Toronto, have seen a cluster of children presenting with transverse myelitis with atypical neuroimaging findings involving significant grey matter involvement and in some case brain stem involvement With the risk of limited recovery given the extensive grey matter involvement at the Hospital for Sick Children they have taken an aggressive approach upfront with treatment with steroids and early plasma exchange if steroids are ineffective. They have reported some recovery with this treatment.
It is also not clear whether this could represent an infectious process (similar to polio) or post-infectious process and what the inciting agent might be. The neuroinflammation service at SickKids (Ann Yeh) is available to provide advice on any suspect cases.
Investigations are currently ongoing to find out whether these presentations are linked to the nationwide outbreak of EV-D68 associated with severe respiratory disease currently seen in North America.
View the CDC Official Health Advisory here
CDC Investigates Limb Paralysis in Children After Enterovirus 68 Outbreak (ABC News)
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