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Published: 08 August 2020

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• Pratibha Singhi

Dr Pratibha Singhi MD, FNAMS, FIAP
Director Pediatric Neurology and Neurodevelopment Medanta, India
Former Head, and Chief Pediatric Neurology and Neurodevelopment, Advanced Pediatrics Centre, PGIMER, Chandigarh, India
Current Office: Secretary General of the ICNA

Dr Singhi completed her MD Pediatrics from All India Institute New Delhi and trained in Pediatric Neurology at The Johns Hopkins Hospital and Kennedy Krieger Institute Baltimore, USA, and in the UK. Since then she has been working on academic posts in India and abroad.

Contributions to ICNA

Dr Singhi's passion for global pediatric neurology drove her towards ICNA several years ago and she had remained associated with it almost since its inception! She has participated regularly in ICNA meetings where she organized symposia, delivered several talks, chaired sessions, and presented her research. Some of her important contributions to ICNA include:

As Executive Board Member: (2014-2018) Dr Singhi enthusiastically contributed to the functioning of ICNA and served on various Committees.

1. Member of the Education and Training Committee: The ICNA mandate has been to promote child neurology education globally and, in particular, to reach out to regions of the world where there was a felt need to enhance education and training in Pediatric Neurology. Dr Singhi worked towards this goal passionately and was appointed the South East Asian Coordinator for ICNA Educational meetings. She organized/participated in a record 26 ICNA Educational meetings worldwide including those in Bangladesh, Belgium, China, Egypt, India, Indonesia, Lithuania, Mexico, Myanmar, Russia, S. Africa, Sri Lanka, Sudan, the Czech Republic, Turkey, Tunisia, and Vietnam. These educational meetings included those where, as a team, she gave lectures, had case discussions, and, also those, where she held focused “hands – on” skill development workshops, such as Management of Cerebral palsy. These workshops were greatly appreciated - with over 400 attendees in the CP workshop held in Bangladesh!
2. Member Scientific Committee for ICNA Congresses: For the ICNC Amsterdam 2016, Dr Singhi played an active role in helping with the scientific content and speaker choices, assessment of applicants for bursaries, evaluation of abstracts etc. She was an integral part, and was deeply involved with the ICNC Mumbai 2018, right from the initial planning, site visits, organization, scientific and socio-cultural program choices etc. The Congress was a huge success and was greatly appreciated by all participants. She has been actively involved in all matters of the ICNC San Diego 2020 - the physical meeting which had to be converted to a Virtual meeting because of the pandemic,
3. Member Long-term Planning Committee: As a member, She interacted closely with the chair - Ken Mack, and had discussions on the various long- term plans that would be beneficial for ICNA in the long run. Implementation of Ken’s idea of abolishing the membership fee has paid dividends to ICNA in the form of an exponential increase in membership.
4. Member Nominating Committee. With Dr Ingrid Tein in the lead, her mandate was to choose deserving candidates for various awards and positions. She had actively participated in these processes throughout.
5. Global Burden of Disease Project on Tuberculosis : Brain-child of Dr Ingrid Tein, GBOD is aimed at conducting epidemiological studies to capture pilot data on the global burden of neurological morbidity quality of life and mortality in resource-challenged regions relating to major treatable neurological diseases. Dr Singhi was awarded the GBOD project on tuberculosis and under this project she studied the profile and spectrum of tuberculosis in over 300 children with TB in and around Chandigarh, India. The GBOD project was completed on time, and the results were presented at the ICNC 2016, and have given an insight into the presentation, management, and outcome of childhood tuberculosis.
6. ICNA book on CNS Infections in Childhood: Dr Singhi co-edited this IRCN book; The book covers a wide range of CNS infections and has been particularly appreciated by people from resource limited countries where such infections continue to cause considerable morbidity and mortality.
7. JICNA: Dr Singhi has actively contributed to JICNA as reviewer and member Editorial board.

Secretary of ICNA

Dr Singhi was elected secretary in 2018 and her mandated responsibilities include

• Close communication with the ICNA officers to ensure continuity of communication – via electronic and video calls.
• Organization and Coordination of board Meetings (Actual and Virtual): Development of agendas, Compiling reports from committee chairs, conducting the meeting in a timely fashion, completion of minutes, co-ordination of the actual board meetings inclusive of ensuring all accommodation and travel information is liaised properly with the local hosts; that board members are invited and aware of lecture topics; also visa invite letters completed; and so on.
• Approval of membership applications
• Communication with the board for their preferred lecture topics, committee preferences, their JICNA submissions and reports, and compilation thereof.
• Liaison with specific groups e.g. negotiations with potential PCOs; development of bid proposals; liaison over requested educational meetings etc
• Communication with other organisations eg ILAE, WFN, CNS.
• Coordination of the FLICNA activities.
• Support of awarded ICNC committees
• Coordination of conference calls and recording matters discussion with action points.
• Assisting the ICNC organizers with access to the standard templates for the congresses which have been developed in the ICNA “virtual home office” etc etc.

In close co-ordination with all the executive officers of ICNA, Dr Singhi has been fulfilling all these responsibilities and more, with the sincerest commitment.

Proposed Future Activities

1. Dr Singhi will be liaising with all the officers concerned in the CNS and the ICNA to ensure that the Virtual ICNC 2020 is prepared in a robust way.
2. Simultaneously, as a team, she would work towards the organization of the ICNC 2022 -Turkey. The ICNA have already done site visits, discussed various organizational aspects with the core PCO and the Turkish Neurological Society. The Scientific Committee has already been formed and activated and are looking forward to an exciting congress.
3. Developing a robust platform for Virtual education dissemination.

Global Experience and insight

Dr Singhi's training, fellowships and work in several countries –including, at The University of Southern California USA, The Johns Hopkins Hospital and Kennedy Krieger Institute Baltimore USA, The Great Ormond Street Hospital London, The Royal Hospital for Sick Children Edinburgh, the Royal Victoria Infirmary, Newcastle Upon Tyne, UK, and the University of West Indies Jamaica, has provided her with rich international experience and wide perspective.

Moreover, for the past several years She has been actively working as National Delegate for the Asian Oceanian Child Neurology Association and this has given her insight into the strengths and challenges of child neurology practice in the Eastern part of the world. All the above experiences have helped her foster friendships with Pediatric Neurologists all over the world. Such a unique blend of experience from both resource limited and resource rich countries as well as from the East and West, is one of her great assets.

Contributions to Child Neurology

A staunch advocate for children with neurological issues across the globe, She has pioneered the development of Pediatric Neurology in India. She started the post-doctoral (DM) program in PGI, conducted 36 research projects including international collaborative projects - Indo UK on NCC, Indo EU on NCL, Indo Swedish on CNS Infections, published 464 papers, edited 4 books, and served on the Editorial Board of prestigious journals.

Dr Singhi was Visiting Professor to universities in USA, UK, Canada, Sweden, Taiwan, and Spain, and delivered over 450 talks in international and national conferences. She was founder member and National President Association of Child Neurology India and Vice President Childhood Disability Group of Indian Academy of Pediatrics. Through her several leadership and scientific advisory positions with UNICEF, World Bank, WHO, National Council for Education Research and Training, Indian Council for Child Welfare, Early Childhood Education and Development Centre, National Institute of Mental Handicap, Bangladesh Rural Advancement Committee etc, She has contributed to the cause of children with neurodevelopmental disorders.

Since 1985, She has provided voluntary service, to thousands of children with special needs at the Rehabilitation Centre Chandigarh and conducted camps in rural and slum areas to help such children and their families. She organized numerous training workshops for early detection and early intervention - not only in India, but also in Sri Lanka and Bangladesh. Her contributions were recognized with numerous gold medals, research awards, orations and international fellowships including the President of India Medal, Asian Research Award, British Pediatric Association Fellowship, Royal College of Pediatrics and Child Health Fellowship, S. Janaki Memorial Oration by the National Academy of Medical Sciences, “Medical Scientist Award”, Nehru Chair award,and AOCN Lifetime Achievement Award.

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Published: 08 August 2020

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• Pratibha Singhi

I would like to see ICNA as the most dynamic and powerful organization that promotes global access to quality care for children with neurological problems. It would be my endeavour to consolidate the excellent work done by my distinguished predecessors and along with the learned Board Members, to take it a step further, through these strategies- Enhance the visibility and vibrancy of ICNA -through global expansion of membership, wider involvement of members in ICNA projects and activities worldwide, and advocacy to influence national/regional authorities to implement policies related to child neurology.

1. Disseminate Education using innovative technology and teaching methods. Prepare a robust framework for Virtual Congresses!
2. Expand horizons, transcend boundaries! - tailor ICNA activities to the felt needs of various regions.
3. Build Local Capacity: create exchange programs for training and skill development.
4. Foster international collaborative research, facilitate young researchers to link with senior accomplished mentors globally.
5. ICNA Synaptic network –increase interactive collegial and organizational links; affiliate regional and national societies with ICNA.
6. Further technologize the ICNApedia educational platform and JICNA.
7. Create an ICNA fund-raising committee to increase the financial strength of ICNA.
8. Engage more of younger members -amalgamate fresh ideas with wisdom of senior members, incentivise with junior research awards and scholarships, link FLICNA members with each ICNA committee, and ensure continuity and smooth transition of ICNA responsibilities to the next generation

I believe my experience as EB member and as Secretary has provided me deeper insights into the functioning of ICNA and if given an opportunity, I will give my best to take ICNA to greater heights.

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Published: 08 August 2020

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• charles newton

ICNA has undergone seismic changes in the last 10 years under inspirational leadership, with the abolishment of fees that has increased the membership from 240 in 2004 to over 3000 in 2020, promotion of young leaders, Global Burden of Disease Fellowships, collaboration with national and international organisations, biennial International Congresses that generate income for ICNA and the publication of position ICNA papers on topics that are important for paediatric neurologists. I think following this tremendous increase in activity and change in membership, ICNA should consolidate and reach out to the members to ask what else ICNA can do for them.

I propose to:

1. Survey ICNA members for their suggestions as to how the organisation can serve them;
2. Reach out to areas under-served by ICNA and the ancillary professions, and promote child neurology in international organisations;
3. Establish JICNA and ICNApedia as multi-lingual and technologically advanced platforms for the dissemination of scientific research and professional documents, that can be used for recognised Continuing Medical Education;
4. Establish a registry of international studies on childhood neurological disorders for trials of rare disorders to the impact of global conditions e.g. COVID-19;
5. Recognise founders and ardent supporters of ICNA such as Isabelle Rapin and Masaya Segawa through lectureships.
6. Increase the Webinars and online workshops for ICNA members.

I vouch to support and develop further the initiatives and activities that are the core of ICNA, to ensure that ICNA continues to grow into a vibrant, energic truly international organisation for the benefit of professions that care for children with neurological disorders; and the children and their families with these disorders.

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• charles newton

Charles Newton was born in Nakuru, in the Great Rift Valley in Kenya in 1958. In 1964 he relocated with his family to the United Kingdom and Ireland. When he was 15 years of age he travelled to South Africa to finish his schooling and to train in medicine at the University of Cape Town (UCT). At UCT Charles studied under the inspirational neurologist Frances Ames, who took on the South African medical establishment over its role in the death of Steve Biko, a black rights activist who died in detention in 1977. Ames was often described as private, discreet, but extremely determined; all qualities that are echoed in Charles Newton. After qualifying, Charles worked in the mid-1980s as a houseman at Guy’s Hospital in London, in the UK. Whilst there he worked under Brian Neville and Fenella Kirkham. They remained friends and collaborators for many years. With Neville’s recent passing (2017) Newton and Kirkham continue the work that the three of them had started decades ago.

With a career that has criss-crossed the globe, Newton has primarily shared his time between a number of African countries (particularly Kenya, to which he returned in 1989 to set up a research unit in a poor rural area) and the UK.

He also spent 2-years in the United States at Johns Hopkins in Baltimore where he studied mechanisms of brain damage in central nervous system (CNS) infections. He completed his training in pediatric neurology at Great Ormond Street Hospital. In 1998 he was awarded a Wellcome Trust Senior Clinical Fellowship at University College London, which enabled him to return to Kilifi, to study CNS infections in children in the African context. The Kenya Medical Research Institute-Wellcome Trust Research Program, in Kilifi on the Kenyan coast has remained one of the major bases for his research during his career and home for many years. In 2011,Newton took up the position of Cheryl and Reece Scott Professor of Psychiatry at the University of Oxford and since then has balanced his time between his commitments in Oxford and ongoing work and mentorship at the different African sites.

Charles has devoted much of his career to highlighting the health challenges and needs of children in the low and low-middle income countries (LMIC) of the world, especially Africa¹ His early career included seminal work on cerebral malaria, an area he continues to research, with solution driven targets being the priority.

The incidence of cerebral malaria cases has declined significantly in many parts of Africa, reflecting effective preventative and often low-cost interventions. Newton’s work in this area has been crucial in uncovering the impact of malaria on the brain, and particularly the role of intracranial hypertension and the various effects of malarial exposure on childhood neurodevelopment.^2-4 His research has confirmed a previously suspected association between childhood exposure to malaria and the subsequent development of epilepsy.² With some 228 million globally reported cases of malaria and 405,000 malaria related deaths in 2018, Charles has been a key contributor to the understanding that the disease is one of the most important preventable causes of epilepsy globally. He has subsequently proceeded to expand work in five African countries looking at the association between exposure to various parasites and neurodevelopmental disorders^{5, 6}.

His research has been key in addressing many previously unanswered questions, including helping to uncover the appreciation that the higher prevalence of childhood epilepsy in Africa, than in Asia, or Europe. Charles’s contributions to understanding the etiology, epidemiology and psychiatric co-morbidities of epilepsy, have played an important role in the drive to reducing stigma and narrowing the epilepsy treatment gap in Africa, where 50-90% of affected individuals have no access to treatment despite the global availability of inexpensive medicines.

His research has incrementally increased our understanding of the association between the epidemiology of various childhood infections and subsequent behavioral consequences, particularly because of the contributing increased risks associated with various environmental and social adversities in low-income countries.

Examples include the association of autism spectrum disorders and other developmental disorders with CNS infections such as malaria, HIV and bacterial meningitis. He also has played a critical role in exploring the relation between sickle cell disease and neurocognitive sequellae in many African countries.

Newton also has been involved with seminal work exploring the genetics of autism, epilepsy and psychosis in sub-Saharan Africa.

These interdisciplinary collaborations across Africa and beyond, involve some of the earliest research exploring the unique contributions of African genetics to neurodevelopmental disorders and has stimulated an interest in the mental health of children from immigrant populations in the United Kingdom and Europe.

Over the years, Newton has worked consistently to explore previously poorly understood non-communicable diseases which, in the LMIC setting, have fallen behind the research and attention given to communicable diseases, namely neurodevelopmental disorders and neurodisability. His close connection to Africa has given him a unique perspective on these important, often neglected focus areas.

His current projects include genetic characterization of NeuroDevelopmental disorders in African populations-Kenya (Neuro-Dev Kenya), Autism and Neuropsychiatric genetics of African Populations- Psychosis (NeuroGap-P) and epilepsy in sub-Saharan Africa. He also is conducting related studies of autism and epilepsy in other African countries and is working on the neurodevelopmental problems associated with sickle cell disease in Tanzania. These efforts represent strong collaborative and mentorship relationships across the continent including in Kenya, Tanzania, Uganda, South Africa, Malawi and Ghana.

Newton’s current affiliations are with the Kenya Medical Research Institute-Wellcome Trust Program, Kilifi, Kenya and Department of Psychiatry, University of Oxford, UK with an additional honorary professorship at his alma mater, the University of Cape Town, South Africa. He has published on a wide variety of subjects concerning sick children in tropical countries and covering all of the areas mentioned above. Charles has over 70 review articles, over 290 original research publications, and numerous book chapters. He frequently presents at international meetings but also supports global educational programs with a particular focus on those in resource limited settings. He serves or has served on the editorial boards of Developmental Medicine and Child Neurology, Epilepsy Research and Treatment, Lancet Neurology, Lancet Psychiatry, Autism research and is editor in Chief for the Journal of the International Child Neurology Association. He has recently been honoured with the Frank Ford award from the International Child Neurology Association for the 2020 International Child Neurology Congress (ICNC), reflecting the scope of his contribution to child neurology over his career, particularly in vulnerable populations in Africa and more broadly in the less resourced areas of the world.

Newton has been a leader in expanding the number of Kenyan scientists, especially psychologists, who are now able to confidently define the phenotype of conditions such as autism in a culturally specific way. His insight into local nuances has ensured that conditions are not misrepresented, for example, in parts of rural Kenya it is viewed as inappropriate for a child to look an adult directly in the eye. People with autism struggle with eye contact, so children in Kilifi score very highly on those parts of the autism questionnaire not because they have autism, but because of the way their culture conditions them to act. The increasing ability of young African researchers to “ask the right sorts of questions” is just one of the many immense changes that Charles Newton has seen take place.

Charles has mentored many clinicians as they developed their career paths, successfully supervising some 20 master degree students, and over 20 PhD students. He has been honored for his continued commitment to capacity building amongst clinicians, scientists and academics in settings spanning rural Kenya to Oxford University and this will remain an enduring legacy. He has served on multiple international boards from the International Child Neurology Association, to the African branch of the International Brain Research Organization, Advisory Committee for Malaria, Geneva, WHO Child Health Epidemiology Research Group (assessment of the Global Burden of Disease), International League Against Epilepsy and the WHO expert panel on mental health Gap Action Program (mhGAP). The scope and depth of these roles represent the global respect he is afforded for his scientific contributions and leadership across these initiatives.

Professor Newton is unique in having maintained throughout his career, a seamless balance of maintaining high level, engaged African research, in Africa, typically leading projects which involved and developed researchers from within Africa who have then gone on to lead research programs and academic institutes in their own right. He truly follows the ethos “lift as you rise”, identifying and mentoring future African leaders in the field of child neurology and development and supporting growth, always with his characteristic generosity and humble, unassuming manner.

REFERENCES

1. Berkley JA, Mwangi I, Ngetsa CJ, et al. Diagnosis of acute bacterial meningitis in children at a district hospital in sub-Saharan Africa. Lancet 2001; 357: 1753-1757. DOI: 10.1016/S0140-6736(00)04897-2.
2. Carter JA, Neville BG, White S, et al. Increased prevalence of epilepsy associated with severe falciparum malaria in children. Epilepsia 2004; 45: 978-981. DOI: 10.1111/j.0013-9580.2004.65103.x.
3. Newton CR, Kirkham FJ, Winstanley PA, et al. Intracranial pressure in African children with cerebral malaria. Lancet 1991; 337: 573-576. DOI: 10.1016/0140-6736(91)91638-b.
4. Carter JA, Ross AJ, Neville BG, et al. Developmental impairments following severe falciparum malaria in children. Trop Med Int Health 2005; 10: 3-10. DOI: 10.1111/j.1365-3156.2004.01345.x.
5. Ngugi AK, Bottomley C, Kleinschmidt I, et al. Prevalence of active convulsive epilepsy in sub-Saharan Africa and associated risk factors: cross-sectional and case-control studies. Lancet neurology 2013. DOI: 10.1016/S1474-4422(13)70003-6; 10.1016/S1474-4422(13)70003-6.
6. Mbuba CK, Ngugi AK, Fegan G, et al. Risk factors associated with the epilepsy treatment gap in Kilifi, Kenya: a cross-sectional study. Lancet neurology 2012; 11: 688-696. DOI: 10.1016/S1474-4422(12)70155-2; 10.1016/S1474-4422(12)70155-2.

Reproduced with permission from:
Ashwal, S. (2021 in Press) Child Neurology: Its Origins, Founders, Growth and Evolution, 2e, 9780128216354. New York: Elsevier