Professor Elizabeth Berry-Kravis MD, PhD is a Professor of Pediatrics and Neurological Sciences and Director of the RUSH Pediatric Neurosciences F.A.S.T. Center for Translational Research at Rush University Medical Center in Chicago. She established the Fragile X Clinic and Research Program at Rush University Medical Center in 1992 and has provided care to over 800 patients with fragile X syndrome (FXS). She conducts research on FXS, including genotype-phenotype, molecular, biomarker, outcome measure, and natural history studies, and clinical trials. She has expanded this clinical and translational work to other neurogenetic diseases in the past 10 years, including work on PMS, NPC, Angelman syndrome, Rett syndrome, Batten’s disease, PKAN, and creatine transport deficiency. She has led the effort to develop new targeted treatments for FXS and other genetic neurological diseases, including antisense oligonucleotides and gene therapy, and has implemented novel trial designs, including N-of-1 trials.
Professor Weerasak Chonchaiya, M.D., holds multiple roles at Chulalongkorn University in Bangkok, Thailand, including Head of the Center of Excellence for Maximizing Children’s Developmental Potential and Deputy Head of Academic Affairs in the Department of Pediatrics. He also leads the Thai Sub-Board of Developmental and Behavioral Pediatrics Fellowship Training Program at the Royal College of Pediatricians of Thailand.
Dr. Chonchaiya earned his M.D. with First-Class Honors from Chulalongkorn University in 1999. He completed his pediatric residency and fellowship in Developmental & Behavioral Pediatrics at Chulalongkorn University in 2007. He then underwent postdoctoral training at the M.I.N.D. Institute, University of California, Davis, and was a visiting scholar at the University of Michigan.
With more than 35 publications and an h-index of 17, Dr. Chonchaiya is a respected reviewer for journals such as Pediatrics, the Journal of Autism and Developmental Disorders, and the Journal of Psychiatric Research. His research focuses on the impact of early childhood adversities, such as inappropriate exposure to electronic media and suboptimal parenting, on child development, behaviors, and executive functions, as well as genomics and proteomics in autism spectrum disorder. His work on the influence of inappropriate electronic media on early childhood development and sleep has influenced the recommendations of the American Academy of Pediatrics. Dr. Chonchaiya actively shares his findings with various stakeholders to raise awareness of the effects of inappropriate exposure to electronic media on children.
Professor Weerasak Chonchaiya will give a presentation on Global Insights on Screen Media Exposure and ‘Virtual Autism’: Exploring the Link
Gauri Divan, MBBS, MRCPCH, is the Director of the Child Development Group at the non-governmental organisation Sangath (www.sangath.in), and her work as a developmental paediatrician focuses on child development, developmental disabilities and adolescent health. The aim of her work is to consider the design and evaluations of scalable interventions in resource poor settings.
Her work in the area of developmental disabilities has considered how best to support families of young children with autism in their care journey. The ‘Parent-mediated Autism Social Communication Intervention for non-Specialists Plus (PASS Plus),’ uses video feedback to support parents to understand their child’s social communication needs which then helps them create a more supportive communication environment for their autistic child. Divan as a co-lead investigator has been awarded, in partnership with the University of Manchester a prestigious National Institute for Health and Care Research (NIHR) award, for the project NAMASTE which aims to design a community based detection care pathway for young children with autism across 4 sites in India, Sri Lanka and Nepal over the next 5 years (2022-2027).
She is on the technical resource group to design a National strategy for Autism care, Government of India and was a member of the Lancet Commission on the Future of Care and Research in Autism, 2019-2021. She is a Fellow of the International Society for Autism Research.
Dr Divan will give a presentation on: Adapting and Innovating: a Model of Autism Care for Low Resource Settings
Professor Stewart Einfeld is a Child and Adolescent Psychiatrist. His clinical and research interests have been with children and families affected by developmental disabilities, especially where accompanied by behavioral and emotional problems. This has included research in clinical assessment, intervention monitoring, epidemiology, health promotion, and behaviour phenotypes of genetic syndromes. He has been a co-leader of programs designed to support families affected by developmental disabilities in remote communities and low and middle income countries.
Professor Einfeld will give a presentation on: Interventions for families with people with developmental disabilities in low and middle income countries and remote areas
Professor Dr THONG Meow-Keong is a Consultant Clinical Geneticist at the University of Malaya Medical Centre. He was a Fulbright Scholar and a board-certified clinical geneticist and established the first Genetics Clinic in Malaysia in 1995. He is the current President of the College of Paediatrics, Academy of Medicine of Malaysia, Vice-President of the Medical Genetics Society of Malaysia, Chair of the Ethics Committee on Medical Genetics of the Malaysian Medical Council and a medical advisor to the Malaysian Rare Disorders Society. He was the previous Chair, Department of Paediatrics, University of Malaya and past President, Asia-Pacific Society of Human Genetics in 2012-2015. He was the recipient of the 2022 American Society of Human Genetics Advocacy Award. He is the current Dean, Faculty of Medicine and Health Sciences, Universiti Tunku Abdul Rahman, Malaysia.
His clinical practice and research are focused on rare diseases, neurogenetic conditions, genomic medicine and genetic counselling. He has published extensively in peer-reviewed journal publications, 5 books, 18 book chapters including the Oxford Monograph in Medical Genetics and an IDEAS White Paper policy document entitled “Rare Diseases in Malaysia”. He is a steering committee member of the Global Genomic Medicine Consortium and invited by the World Health Organization and the Ministry of Health Malaysia to advise on issues related to medical genetics. He was elected a Fellow of the Academy of Sciences Malaysia, Fellow of the Academy of Medicine of Malaysia and Honorary Fellow of the Academy of Medicine, Singapore.
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The Society for the Study of Behavioural Phenotypes (SSBP) is an international, interdisciplinary research society for studying the development, learning and behaviours of individuals with genetic disorders and ways of helping to improve lives. The society is registered as a charity in the UK (No. 1013849) and was set up in 1987.
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