Contributors

The CPRN has been repeatedly ranked among the top national medical quality records in Norway by The Norwegian Advisory Unit for Medical Quality Registries. Andersen is a member of the CP research group at NTNU, and currently holds a 10% position as an Associate Professor at the Department of Clinical and Molecular Medicine, Faculty of Medicine and Health Sciences at the university.  

Guro has 46 publications, with over 500 citations. She has also been supporting supervisor for 8 PhD candidates, and is currently supervising 4, 2 as the main supervisor.  

In 2003, Andersen joined the Surveillance of Cerebral Palsy in Europe (SCPE) on behalf of the CPRN, which a broad network on cerebral palsy in Europe. She is co-author on many papers based on data from both the CPRN and the SCPE. In 2014, she was elected as one of two Deputy Chairs of the SCPE Steering Committee. Andersen was also an elected member of the General Managing Committee of the European Academy of Childhood Disability (EACD) for the years 2014-2017. 

She has since achieved :

• Fellowship in P&RM at Children’s Hospital Sor Maria Ludovica 
• Specialist in Physical and Rehabilitation Medicine from SAMFYR (Physical and Rehabilitation Medicine Argentinean Society) and Buenos Aires Doctors Association 
• Certified Doctor from AMA (Argentinean Medicine Academy) 
• Specialist in Pediatric Physical and Rehabilitation Medicine from SAMFYR 
• Physiatrist of the P&RM service at Children’s Hospital Sor Maria Ludovica since 1994. 

Carolina has held many roles 

• Chairwoman in charge of the Cerebral Palsy Program. 
• Founder and Medical Director of CRIA since 1997 
• Coordinator and Trainer of the Botulinum Toxin Program of Buenos Aires. 
• Member of the SAMFyR committee. 
• Member of CARPE 
• Member of ISPRM 
• Coordinator of the Spasticity Interdisciplinary Committee of at Children’s Hospital Sor Maria Ludovica. 
• Trainer and Teacher of residents of P&RM program at Children’s Hospital Sor Maria Ludovica. 

Her Post-Doctoral work focuses on community-based early detection and intervention for infants at high risk of cerebral palsy in cross-cultural contexts (Indigenous Australia and West Bengal, India). Kath’s PhD explored oropharyngeal dysphagia, gross motor function, growth and nutrition in preschool children with cerebral palsy, in both Australia and Bangladesh. She has around a decade of experience as a speech pathologist within paediatric disability, with the Cerebral Palsy League of Queensland (Child and Family Support Services) and Yooralla Early Childhood Services (Melbourne). Kath has lived experience incross-cultural issues in child health, having lived and worked in low-middle income countries for a number of years including Bangladesh (AusAid volunteer teaching on the country’s first Bachelor of Speech Therapy degree, as well as conducting research in this context), Uganda, and India. She has completed her Master of Public Health at La Trobe University within the research and international health streams.

She is currently based at the Charlotte Maxeke Johannesburg Academic Hospital (CMJAH) in Johannesburg South Africa, and is a senior consultant working in the Neurodevelopmental clinic. Jacqui completed her Paediatric registrar training in 2008 and after completing the University of Witwatersrand (Wits) MSc Neurodevelopment course in 2012, realised her passion was working with children with special needs. She received the Discovery Foundation award in 2013 and began her sub-speciality training in Developmental Paediatrics under the guidance of Professor Lorna Jacklin. Jacqui is a senior lecturer at Wits and is the Wits MSc Neurodevelopment coordinator as well as a co-coordinator for the Wits MSc Child life and Psychosocial care.She is an elected member of the Global Professional Education Committee for the International Alliance of Academies of Childhood disability (IAACD). She is also a board member of the Children’s Memorial Institute (CMI) and currently heads up the PR and History subcommittee.

She has been a Community Paediatric Physiotherapist for 22 years and has worked in Wales for 18 years specialising in a caseload of children with neuro-disability.  Philippa is currently the Cerebral Palsy Integrated Pathway (CPIP) Representative for Wales and represents the CPIP National Network on the Association of Paediatric Chartered Physiotherapists National Committee. She is also on the Steering group of the Cerebral Palsy Register for Wales.

Following graduation, she worked in England in both health and education settings specialising in working with children with physical disability and learning difficulties. Helen moved to Wales in 2002 and continued to work within the NHS working with a variety of client groups in Special Schools and Children’s Centres. She completed a Bobath foundation course in 2011. Her current caseload is children with cerebral palsy and allied neurological conditions. She has a special interest in eating and drinking skills and supporting access to communication using alternative and augmentative communication systems, applying Bobath principles as a foundation to her clinical reasoning.

Prior to joining the faculty at McMaster, Dr. Kraus de Camargo held positions as a Professor of Social Medicine at the University of Applied Sciences Nordhausen and as CEO and Medical Director of Kinderzentrum Pelzerhaken gGmbH in Germany, an inpatient and outpatient facility for children with developmental-behavioural disabilities and chronic neurologic disorders. 

Dr. Kraus de Camargo is a scientist at the CanChild Centre for Childhood Disability Research and a member of MacART (McMaster Autism Research Team). He continues practicing as a developmental pediatrician at the Ron Joyce Children’s Health Centre in Hamilton, Ontario.  

Since 2001, Olaf Kraus de Camargo has been involved with the implementation of the WHO – International Classification of Functioning, Disability and Health (ICF). He co-edited the book ICF: A Hands-On Approach for Clinicians and Families (http://www.mackeith.co.uk/shop/icf-a-hands-on-approach-for-clinicians-and-families-ebook/)  

View Dr. Kraus de Camargo’s research and publications on ResearchGate, a digital network dedicated to science and research. 

Connect with Dr. Kraus de Camargo via Social Media: 

LinkedIn – www.linkedin.com/in/krausdecamargo 

Twitter – @devpeds 

She is a twice past president of EBTA, a past chair of their Education Committee and an Honorary Member.  

Dr Capelovitch is a former Senior Lecturer at the PT school of Haifa University and Tel Aviv University (Asaf Harofeh PT School) . She is Chair of the Israeli National Tutors organization teaching nationally and internationally, Bobath Foundation, Advanced, Baby (qualified by the late Mary Quinton and Dr. Elsbeth Kong) and Refresher Courses.  

Dr Capelovitch received the Life Achievement Award from The Israeli Association of Child Development. She is mother of 2 daughters, an OT ad a PT.  

She is passionate about quality services and continual improvement and led the first physiotherapy department to receive the UK government’s Charter Mark in 1996.  She supports clinicians in integrating the ICF (International Classification Functioning Disability and Health) into their practice, including clinical reasoning and service measurement.

Jenny has a particular interest in Goal Attainment Scaling (GAS) and its use to measure the effectiveness of therapy for individuals and services.  GAS has been used at Cerebral Palsy Cymru since 2006. Her focus is on services being able to demonstrate effectiveness in an economical yet robust way.

She is a former treasurer of the European Academy of Childhood Disability (EACD) and current member of the Global Professional Education Committee of the IAACD and the Covid-19 Task Force. She is also chair of the IAACD Nominations Committee.

Jenny is co-lead on a project developing a Cerebral Palsy Register for Wales.

Her main professional interests are: neurodevelopmental disorders in children, clinical genetics, rare diseases, cerebral palsy and neuromuscular diseases.  

She works with the Foundation for the Development of Psychomotorics in Warsaw, implementing a program to improve children with neurodevelopmental disorders according to Belgian Model Procus-Block. 

Magdalena supports the  SPINA Foundation, which brings together parents of children with Myelomeningocele.  

She is the EACD coordinator in Poland.  

Magdalena is co-author of numerous scientific publications and chapters in academic textbooks. She is an academic teacher. She especially likes traveling and biographical books. 

She is a former treasurer of the European Academy of Childhood Disability (EACD) and current member of the Global Professional Education Committee of the IAACD.    

She is co-lead on a project developing a Cerebral Palsy Register for Wales. 

She has numerous years of clinical experience treating pediatric and neurological clients in educational and rehabilitation settings. Her main experience lies in infants diagnosed with or at high risk of cerebral palsy 

As a teacher she worked from 1996 to 2009 as a full time member of the teaching team at the Academy of Physiotherapy – General Hospital Vienna and since 2006 she is a lecturer of pediatrics and neuropedatrics at the physiotherapy department of the University of Applied Sciences – Campus Wien. 

From 2004 to 2018 she was the Austrian Contact person of the European Bobath Tutor Association (EBTA) and is a member of EACD.  

His clinical and research interests include cerebral palsy, neurogenetic conditions and neurophysiology.  

Bernard was the 2010 president of the EACD and chaired the scientific committee of the academy until 2019.  

He has written over 250 articles in top-ranking journals, textbooks on Angelman syndrome and  childhood disability. He has co-edited a major reference book on cerebral palsy and one on ethics in childhood neuro–disability.  

Bernard has served as scientific curator for several art exhibitions relating to disability and authored novels and short stories. 

Her early employment was at the Royal Children’s Hospital in Melbourne, then she worked for several years as a senior physiotherapist at the Hospital for Sick Children in London with the Department of Neurology.  

Sarah completed her post graduate studies in health research methods in 2005, studying the effectiveness of partial body weight support treadmill training for children with cerebral palsy. She has been responsible for leading collaborative research partnerships within Kids Plus Foundation.  

Recently, Sarah has developed an early detection and intervention program, Be- SMART, for infants born at risk of neurodevelopmental disabilities as part of the Kids Plus therapy programs – an innovative program providing early development support for at risk babies on hospital discharge. Her leadership in the program has included training therapists within Kids Plus on best practice in early identification and intervention with infants. 

With a strong interest in clinical practice, Sarah is also trained as a Senior Bobath Tutor and is a life member of ABNDTA in recognition of her involvement in teaching clinically based courses on the treatment of children with CP both Australia wide and overseas. More recently she has developed online learning courses on the classification of the movement disorders in CP and understanding typical /atypical development in babies and children.  

Sarah is also a regular guest lecturer on post graduate physiotherapy courses in Australia. 

She is a Developmental Psychologist by background. She has taught on Speech and Language Therapy and Psychology programmes for over 35 years, and supervised more than 25 PhD students. She has published more than 60 academic journal articles. 

Juliet’s research addresses the communication challenges experienced by people with severe and profound learning disabilities or complex physical disabilities. She worked on the recently completed I-ASC project which aims to enhance clinical decision making in the provision of symbol communication aids to children with little or no functional speech (https://iasc.mmu.ac.uk). 

She has been involved in establishing the evidence base for communication interventions for children and adults with a range of difficulties and her work features in the U.K. Government’s on-line training course on Complex Needs (http://www.complexneeds.org.uk/).  

Juliet has commitment to working in partnership with professionals, researchers and families, including those in under-served countries.  

j.goldbart@mmu.ac.uk 

Danijela is involved in many projects as Parent Researcher where she share her extensive lived experience and she love to work as a parent advisor and advocate. Danijela has been a member of the F-words in Childhood Disability Research Team since February 2014. She was involved in the F-words Awareness Video Project (2014) and in 2015 created the F-words Photo Collage. Danijela has co-presented on the F-words on multiple occasions (including poster presentations, oral/panel presentations, and invited workshops) and has been involved in developing the Knowledge Hub.

She has been drawn towards developmental paediatrics as a speciality because of  two factors – the plight of affected children and their families and association with Dr G Shashikala, a developmental specialist and a selfless crusader towards the cause of improving health care delivery for such children.   

Professor Girish has led a team of professionals from the Indian Academy of Cerebral Palsy, in devising a structured approach to the assessment and initial management of children with developmental disabilities for primary care physicians, in order to equip them with the necessary knowledge and skill to detect, manage, refer and follow-up cases of development disabilities.  

She is currently working on creating a composite scoring system for functional limitations in children with cerebral palsy. 

Dido’s research interests focus on translational medicine and inter-disciplinary collaborations, investigating brain and behaviour relationships to develop interventions which promote participation. Identification of factors contributing to outcome, determination of time scales of motor learning and predictive modelling of response to treatment are important components of this work; receiving > £7.5 million in research grant funding. Dr Green is currently Professor in Occupational Therapy and researcher in the CHILD Research Group at Jönköping University, Sweden, Professor in Occupational Therapy at Brunel University and Research Therapist Royal Free Hospital, London UK and Associate Editor of Developmental Medicine and Child Neurology and Editor of Physical and Occupational Therapy in Pediatrics. 

Along with her clinical duties, as a licensed kinesiological physical therapist in the state of California, she performs gait analysis in the Center’s Kameron Gait and Motion Analysis Laboratory. In collaboration with the Director of the laboratory and Medical Director of the Center, she interprets the data for treatment recommendations.

Ms. Greenberg worked at Rancho Los Amigos National Rehabilitation as a staff therapist, clinical supervisor and visiting lecturer, presenting continuing medical education workshops to physical therapists throughout the US and Canada. She was later on faculty at the Chapman University School of Physical Therapy.

Since 2014, she has taught evidence-based rehabilitation to physical therapists around the world, including El Salvador, Colombia and Ukraine. She has authored peer-reviewed articles and presented at numerous scientific conferences. Marcia is also a member of the IAACD Global Professional Education Committee.

He has a passion for children’s health that stems from personal experience of having a younger brother with cerebral palsy. He holds several positions including the co-chair of McMaster’s pediatric medicine interest group and volunteer coordinator of International Women and Children’s Health Conference 2021.

Mark has also worked on several research projects including quality improvement for pediatric constipation, chart reviews for pediatric infections in neonates, and presenting on the topic of pediatric autoimmune encephalitis in Hamilton. He is looking forward to pursuing the field of pediatrics and improving the healthcare of patients both via research and educational initiatives.

Mintaze graduated from Hacettepe University, School of Physical Therapy and Rehabilitation in 1989. She received her doctorate degree supported by a Hacettepe University Research Bursary in 1998.

Mintaze teaches pediatric rehabilitation to graduate and post graduate students of physiotherapy.

Since 1993, she has been a member of EACD, serving on its nominations committee and she is a member of the membership committee of IAACD.

Mintaze is Chair of the Association of Child Physiotherapists, a senior EBTA tutor and Chair of the Turkish Neurodevelopmental Therapists Association.

E-mail: mintaze@hacettepe.edu.tr

A central objective of her  research activities is to study fetal and neonatal risk factors (e.g. prematurity, brain injuries, inflammation), and potential protective factors (e.g. genetic mechanisms, early parent-infant interaction) and their possible long-term neurodevelopmental effects.  

Another important research focus is to standardize clinically applicable developmental assessment methods and compose treatment guidelines which would harmonize clinical treatment processes at national level (e.g. the processes of care for children with CP) in order to make intervention studies and benchmarking possible.  

Her research deals in particular with pathophysiology, early detection of developmental disabilities, and early intervention. The research on pathophysiology focuses on general movements and postural control, that on early detection on general movements, the Infant Motor Profile (IMP) and the Standardized Infant Neuro-Developmental Assessment (SINDA).

Together with Tineke Dirks she developed the early intervention program COPCA (COPing with and CAring for infants with special needs – a family centred program).

She has (co)authored over 250 publications in internationally peer reviewed journals, and she has published four books. Currently Mijna is working on a book on Early Detection and Early Intervention in Developmental Motor Disorders and the manuals of the IMP and SINDA.

Mijna served ten years on the board of the European Academy of Childhood Disability (2000-2009).

She frequently teaches and lectures about early detection and early intervention worldwide.

She is leader of the CP Register of western Sweden, and Scientific Activities Group of the Surveillance of Cerebral Palsy in Europe, the research network behind the MRI Classification System. Kate is the author of numerous publications. 

 Veronka has a special interest in cerebral palsy and imaging in cerebral palsy. She is part of the EU wide network (Surveillance of Cerebral Palsy in Europe, SCPE).  

Veronka is involved in studying the epidemiology of CP. She contributed to the development of the Reference and Training Manual of the SCPE, especially concerning the part on neuroimaging and the development of the classification system for MRI results in CP (MRICS).  

She is a statistician and health services researcher with major interest in severity of illness measurement (developed the Comprehensive Severity Index (CSI®)) and has conducted 35 multi-site practice-based evidence comparative effectiveness studies, including 4 in rehabilitation. 

Karen is Chair of Informatics for Quality Committee of the Royal College of Paediatrics and Child Health in the UK and leading on harmonisation of paediatric terminologies, underpinned by SNOMED-CT codes, so that each and every need of all children and young people can be made visible.       

Karen is also associate editor for Developmental Medicine and Child Neurology, co-director of the Paediatric Disability Distance Learning Courses and clinical lead for Disability Matters: www.disabilitymatters.org.uk 

Karen was clinical coordinator for the neurodisability work-stream of the Child Health Outcome Review programme, commissioned by NHS England’s Health Quality Improvement Programme, led by the National Confidential Enquiry into Patient Outcome and Death (NCEPOD). This examined in detail the quality of care for children and young people with cerebral palsies across the UK: http://www.ncepod.org.uk/2018cn.html 

Karen is passionate about using population data for advocacy and quality improvement in experience and outcomes for all disabled children and young people. 

Her research in resilience started as an Honors Thesis project at McMaster, working with the CanChild Foundation to conceptualize the idea of resilience within the ICF framework. Julia’s Master’s degree fostered her passion for teaching and meaningful knowledge translation. She currently works as a research associate at Kingston Health Sciences Centre, studying influential factors for Quality of Life in cancer patients, and examining stress and resilience in healthcare workers.

Christine’s clinical experience led to a long-standing interest in the participation outcomes of those with childhood-onset neuro-disability. Using a range of methods and approaches, her research has predominantly involved children and young people with cerebral palsy, and been focused on describing patterns of participation, developing measures, designing and testing interventions of relevance to occupational therapy and other allied health practices. Her research track record includes over 100 peer reviewed publications, more than$11.3million (AUD) in grant income, and supervision of 30 research students.

She was recently involved in developing the NICE guideline for the Developmental Follow up of the Preterm Infant and is activity involved in promoting EI SMART as a model for delivering early intervention to infants at high risk of developmental delay and cerebral palsy. http://www.eismart.co.uk/  

She works in the Department of Neonatal Neuroscience at University of Bristol and her research involves the use of standardized developmental measures and MRI to evaluate developmental outcome and to inform early interventions for infants after perinatal brain injury which has resulted in several publications in the field.    http://www.bristol.ac.uk/clinical-sciences/research/neurosciences/research/neurology/    

Sally continues to also work clinically as Consultant Lead for a transdisciplinary early intervention service for infants diagnosed with or at high risk of cerebral palsy at Bobath Children’s Therapy Centre, Wales. http://www.bobathwales.org/specialist-service/better-start-better-future/  

Gosia further specialised in the field of paediatric neuro-disability whilst working across a variety of community and acute healthcare settings in Poland and the UK. She joined the Cerebral Palsy Cymru in 2011. Gosia has a particular interest in early detection and intervention for infants who are at high risk of neurodevelopmental delays. She is passionate to deliver services which are family-ledand are tailored to individual needs and circumstances. Gosia runs a support playgroup for families of high-risk infants; she is also involved in developing an intervention pathway for children with unilateral cerebral palsy at Cerebral Palsy Cymru.

After qualifying as a physiotherapist in 1981, she worked in a variety of paediatric settings within the National Health Service in the UK, and then as a Consultant Physiotherapist at the Bobath Centre, London; specializing in the treatment of children with cerebral palsy.

Virginia has a special interest in outcome measures, presenting on this topic nationally and internationally.  She teaches on UK post-graduate courses and internationally in developing countries.

Virginia has published in a variety of peer reviewed journals. Her current research focuses on improving outcome measurement in children with more severe mobility impairments.

His publications have touched a broad range of topics in child neurology, and during the last 18 years he has concentrated on the clinical scientific work in neuromuscular disorders.  

He has conducted several German multicenter trials in NMD as a principal investigator, being the head of the Trials Organization Center of MD-Net and The Clinical Trials Coordination Center of TREAT-NMD. 

He coaches families of children and adults with developmental disabilities or acquired brain damage towards learning and inclusion.  

 He has been associate professor at the University of Antwerp, Faculty of Medicine & Health Sciences (Belgium), where he teaches disability issues, interprofessional collaboration and the biopsychosocial model.  

He is also visiting professor in Santiago de Chile and Cluj-Napoca (Romania). He coordinated several European multi-national projects on inclusive & cognitive education.  

His other research interests are: functional disability assessment, ethical decision making, CP rehabilitation, children with Down syndrome and children born very preterm. 

Faculty of Medicine & Health Sciences, University of Antwerp, Campus Drie Eiken, Doornstraat 33s, 2610 Wilrijk, Belgium. Email: jo.lebeer@uantwerpen.be  

She is founder and president of Ethiopian residence community based NGO called Gojo Accomodation and Temporary shelter for Patients in need which has accomplished tremendous change in the life of vulnerable patients with cancer, disabilities and chronic illnesses who has no means for shelter, food and transportation during their stay at government hospitals as of December, 2014.  Selamenesh is passionate about working with children with Disabilities. She is working to become the first Developmental and Behavioural Pediatrics Specialist in Ethiopia (an important but nonexistent field in Ethiopia). She has established the first neurodevelopment and behavioral pediatrics clinic at Tikur Anbessa Specialized Hospital, working on children with disabilities as of May 2019 through expert networks she created with developed countries. She brought the hidden discrimination of children with disabilities forward to the stakeholders to promote their functionality. She isCommunication and promotion chair of Eastern Africa Academies of Childhood Disabilities (EAACD) and EAACD representative of Global Professional Educational Collaboration (GPEC) of the International Alliance Academies of Childhood Disability (IAACD). Dr Selamenesh is 2020/2021 Mandela Washington fellowship alumni and 2019/2020 Ethiopian Woman of Excellence titleholder by AWIB. Different stakeholders including the Ministry of Science and Higher Education, Ethiopia recognize her as an Exemplary woman.

Twitter: @DrTsige

FB: https://www.facebook.com/selamenesh

Linkedin: https://www.linkedin.com/in/selamenesh-tsige-683900199

Dr Leiber joined the organization (then the Rehabilitation Institute of Chicago or RIC) in March 2014, bringing an extensive research focus on the science and physiology of skeletal muscle. Dr. Lieber is the established expert in the field, both nationally and internationally, and is a pioneer in conducting translational research. 

As Chief Scientific Officer, Dr. Lieber oversees the work of more than 200 researchers. Under his leadership, are more than 300 research studies and clinical trials.  

Specifically, Dr. Lieber’s research is studying the design and plasticity of skeletal muscle. Currently, he is developing state-of-the-art technical and biological approaches to understanding and solving painful and debilitating muscle contractures that result from cerebral palsy, stroke and spinal cord injury. 

He has published more than 300 articles in scientific journals, from the fundamental journals such as Biophysical Journal and the Journal of Cell Biology to the more applied-science publications such as the Journal of Hand Surgery and Clinical Orthopaedics and Related Research. 

Over the span of his career, Dr. Lieber has won numerous prestigious awards, among them Kappa Delta Young Investigator Award, American Academy of Orthopaedic Surgeons, February 1994; Fulbright Scholarship (Sweden), 2007; The Göteborg University Medal, Sahlgrenska University Hospital, June 2007; Giovanni Borelli Award, American Society of Biomechanics, August, 2007; Kappa Delta Award, American Academy of Orthopaedic Surgeons, February 2013, Chicago, IL; and most recently, Fellow, American Institute of Medical and Biological Engineering (AIMBE), March 2019, Washington DC. 

Prior to joining Shirley Ryan AbilityLab, Dr. Lieber was Professor and Vice Chairman of the Department of Orthopaedic Surgery at the University of California, San Diego (UCSD), and principal investigator of the San Diego Skeletal Muscle Research Center.  

Dr Leiber earned his doctorate in Biophysics, with a minor in Electrical Engineering, from the University of California, Davis, where he also earned a BS in Physiology. He earned his MBA from the Rady School of Management at UCSD. 

https://www.sralab.org/researchers/richard-lieber-phd 

Dr. Romeiser-Logan received her BS in Physical Therapy at Ithaca College and her MA in Special Education at the College of St. Joseph the Provider. She completed her PhD in Pediatric Science at Rocky Mountain University of Health Professions, Provo UT.  

She is a member of APTA Sections on Pediatrics, Research and Neurology; the American Association for Cerebral Palsy and Developmental Medicine; serving as the past chair of the International Committee, Outcomes Committee, Communication Committee and Newsletter Editor. She has spoken at many conferences and co-authored several chapters.  

Lynne’s research interests are varied. Her dissertation research evaluated the physiological effects of sensory level electrical stimulation on the quadriceps and hamstring muscles in children with cerebral palsy. She recently received a grant to study gait and leg length inequality in children with CP.  

Lynne has a continuing interest in the practice of evidence based therapy and the methodology for conducting systematic reviews. She was part of a multi-center trial of the Walkaide Neural Orthotic. She is currently PI of the Adult Spina Bifida Clinic at Upstate and working on a study of tethered cord syndrome through the Spina Bifida registry. She serves on the committee for science and publication of the registry.  

Lynne chairs the Outcomes committee at Upstate which has created an outcomes website for the therapists with valid and reliable measures. The committee is currently working on core outcomes by diagnosis group to be used throughout the rehabilitation continuum. 

For relaxation Lynne races sailboats, gardens, kayaks, hikes, ice skates, studies ikebana, and travels. 

 She has started her PhD program at the Queen Margaret University in Edinburgh, UK.  

Petra leads the Diploma of Advanced Studies (DAS) in Neurodevelopmental Therapies (University of Basel). Her experience lies in pediatric physiotherapy, with a main focus on treating children with neuromotor disorders.  

She has a wide knowledge in assessments and gait training, including robotic-assisted gait training. She likes to translate scientific findings into clinical therapeutic handling and, vice versa, to design research projects based on clinical questions.  

She is a certified trainer in SEN by the Scientific-Pedagogical Councils and a Consultant-Specialist in educational evaluation of training courses for teachers.

She has been a Psychologist in the Portuguese Association of Cerebral Palsy and other associations, that provide cognitive and emotional support to children with SEN and their families. She is the Coordinator of a Developmental Centre – a multidisciplinary team that cooperates with mainstream schools, helping the development of intervention and educational plans.

She has supervised theses on special Education and internships in Psychology and created programs of social competencies and cognitive development.

She delivers lectures and workshops at universities, on SEN and educational processes, to professionals of education and rehabilitation and has presented the results of investigations in international meetings.

Now, Catarina works with an international team on the implementation of a support net for students with SEN in higher education.

She defends Inclusion and Empowerment as the only way of building an equal society and she hopes, one day, it will not be a topic anymore as the full participation of all, and each one, will be a reality.

Nicole joined the team at Bobath Children’s Therapy Centre Wales in February 2018 and completed the Early Assessment and Intervention with Babies and Young Children.  Nicole has presented internationally on the ‘Video self-modelling’ tool for children with cerebral palsy. She has also been involved in volunteering with a children’s home for children with C.P in Uganda, where she worked to train staff, including therapists, and volunteers as well as providing education to families in the community.  

Nicole is passionate about inclusion for children with disabilities and wrote a children’s book, ‘The Magical Sunglasses’ which includes a child with cerebral palsy and demonstrates some of the concepts (such as self-efficacy) behind the video-self modelling technique. 

Marije Meuwissen started her medical career in neurology. She specialized in clinical genetics at the Erasmus University Medical Hospital in Rotterdam, The Netherlands. During her PhD, she was involved in the phenotypic characterization of pediatric cerebrovascular disorders, with a main focus on COL4A1 and COL4A2 mutations. In addition, together with her research group she discovered USP18-mutations as a cause of pseudo-TORCH syndrome, a severe condition associated with prenatal or neonatal cerebral hemorrhage. For this research, she won the young investigator award of the European Society of Medical Genetics in 2014.

Currently, her main research topics are cerebrovascular disorders, cerebral palsy and brain developmental disorders.

She is a member of the COST-action European Network on Brain Malformations and is a representative in the European Reference Network ITHACA, focused on intellectual disability and congenital malformations.

The goals of PenCRU are consistent with the broader mission of PenCLAHRC, whilst being focused on childhood disability research. PenCRU involves families of disabled children as partners in all the activities of the unit through our Family Faculty. The vision for PenCRU is to work in partnership with families, clinicians and commissioners as the principal users of our research findings. Activities include identifying research questions, designing research projects, and disseminating the findings to various users of research findings. 

PenCLAHRC is the National Institute for Health Research (NIHR) Collaboration for Leadership in Applied Health Research and Care (CLAHRC) South West Peninsula 

Now, as a medical student at McMaster University in Canada, I have continued to cultivate a passion for working with children with developmental conditions and their families, and I aim to go on to pursue further training in Pediatrics. I am grateful to have the opportunity to be involved as a reviewer for IAACD. The materials I have been exposed to have enabled me to both broaden my own knowledge base and feel optimistic about the work being done by passionate people all around the world. 

Helena has been able to extend her vision for increasing child participation within a role in the commercial and manufacturing industry where she has a clinical consultancy role that looks to assist with increasing child and family involvement in the clinical training and product development agenda within etac R82 UK Ltd. This has enabled her to extend her therapeutic and research skills and confidence on national basis through clinical assessment training across the UK. 

Helena is currently working as an occupational therapist at Bobath Children’s Therapy Centre Wales where is able to apply her passion for working with children with neurological and occupational needs, enabling them to participate in their own therapeutic journey. 

Her specific areas of expertise  are Cerebral Palsy comprehensive care, advanced spasticity management through the use of baclofen, neurotoxin injections, phenol, and intrathecal baclofen pumps, electrodiagnostics with EMG/NCS, inpatient pediatric rehabilitation care, wheelchairs and equipment, and adaptive sports.  

Inspired by philosophical pragmatism, his research aims to bring to the forefront the lived experience of ethically problematic situations by patients and stakeholders and then to resolve them collaboratively through deliberative and evidence-informed processes. 

She had many years’ experience as a paediatrician and is now concentrating on her research program.  This is focused on gaining a better understanding of the causes,  along with improving outcomes and quality of life for children and adolescents with disabilities, particularly cerebral palsy”.  ​

Sarah has specific clinical and research expertise in promoting and enabling participation for youth with cerebral palsy in community physical activities and intensive functional goal-directed training.  

Sarah is currently employed as a postdoctoral research fellow at the University of Queensland Child Health Research Centre, working on two multi-site clinical trials.  

Sarah’s vision is for an active and healthy society that is inclusive and welcoming for youth with disabilities and health conditions. 

Ricardo is fluent in Portuguese and also English to intermediate level. 

He is currently working in private practice as a child neurologist– (Chapecó – Santa Catarina – Brazil). He is also a lecturer and Professor of Post-Graduation at UNOESC and UNOCHAPECÓ. 

Ricardo’s publications include: 

1. Pediatric neurotoxocariasis with concomitant cerebral, cerebellar, and peripheral nervous system involvement: case report and review of the literature. J Pediatr (Rio J). 2010 Nov-Dec;86(6):531-4. doi: 10.2223/JPED.2037. 

2. Treatment of refractory neonatal seizures with topiramate. Neuropediatrics. 2012 Dec;43(6):353-6. doi: 10.1055/s-0032-1327771. 

He is a member of the following organisations 

• Sociedade Brasileira de Neurologia Infantil 
• Liga Brasileira de Epilepsia 
• International Child Neurology Association 

Peter has held more than 80 peer-reviewed research grants and is a contributing author to over 330 peer-reviewed journal articles and book chapters. He has been an invited lecturer and keynote speaker in 30 countries. He co-authored “Cerebral Palsy: From Diagnosis to Adult Life” (2012), and co-edited “Life Quality Outcomes of Children and Young Adults with Neurological and Developmental Conditions” (2013) with Dr. Gabriel Ronen. In 2016, he and colleagues published a book on ethical dilemmas in developmental medicine.  

Peter is a member of the IAACD Global Professional Education Committee. 

https://www.mcri.edu.au/users/aprofessor-adam-scheinberg

Arnab’s interests are in medical education and training, particularly in the developing world. He is the current Chair of the Global Professional Education Committee and is the Prospective Chair of the European Academy of Childhood Disability (EACD)​.

She is Director of Paediatric Physiotherapy Research at the University of Melbourne and and National Health and Medical Research Council Career Development Fellow.  

Alicia is a passionate researcher who leads the motor team within the Victorian Infant Brain Studies (VIBeS) group at Murdoch Childrens Research Institute, along with holding a clinical appointment at the Royal Women’s Hospital, Melbourne. She is the first Australian tutor of the General Movements Assessment and is leading a collaboration with an international team of experts to use innovative technology to improve access to early detection of cerebral palsy.

Her clinical research interests include epilepsy, cerebral palsy, stroke and neurodevelopmental disorders. 

From 2008 to 2017 Professor Tatishvili was Chair of the scientific committee and organizer of the “Regional Caucasian Summer School on Clinical Epileptology”, in partnership with the Committee of European Affairs of the International League Against Epilepsy. 

She author of a residence program in pediatric neurology and competencies in pediatric neurology in Georgia. 

Professor Tatishvili received the European Epilepsy Education Award in 2016. She was President of the EACD 2018 annual meeting in Tbilisi, Georgia.  

Professor Tatishvili is author of 52 publications and one monograph. 

Sofia is also Service Director of Early Childhood Intervention (ECI) at NDC.

At CanChild, Rachel oversees the CanChild Shop and the Measurement and Analysis Service.  

She has a Master’s degree in Rehabilitation Science, and is a member of CanChild’s F-Words and Participation research teams.  

A Yee is an examiner for the RCPCH and DCH examinations.  

A Yee has a passion for education, training and research in physical neuro–disability.She is really enthusiastic to develop protocols and guidelines and to follow the NICE guidelines for children with physical disabilities. She has undertaken audits for oral drug usage, classification and clinical information and clinical practice against NICE guidelines for children with cerebral palsy.  

A Yee has made recommendations and developed templates for clinical assessment for children with motor disabilities/cerebral palsy. 

A Yee holds speciality clinics with orthopaedic surgeons, physiotherapists and also ajoint clinic with a neurologist.  

A Yee developed a local spasticity network that has regular meeting to ensure the recommendations from the NICE guidelines are met and to provide high quality co–ordinated care for children with cerebral palsy and motor disabilities.

Kirsty graduated from Cardiff University in 2010 with a First-Class Honours degree and then specialised in Paediatric Physiotherapy. She first worked in the Noah’s Ark Children’s Hospital for Wales, doing acute rotations and emergency duty. She also did community rotations within Cardiff and Vale, managing varied caseloads in children’s centres and schools. During this time, she was involved in transitions to a new hospital and school, and produced leaflets on talipes, bubble PEP and standing frames.

Kirsty has a twin with spastic quadriplegic cerebral palsy and has a particular interest in neuro-disability and family-centred care. She joined the team at Cerebral Palsy Cymru in 2015 and enjoys transdisciplinary working, using the COPM, goal-setting using ICF, and providing individual and group therapy.

She has completed several courses, including: Bobath Introductory, Foundation and Early Intervention Courses, Posture Management Course and Assisting Hand Assessment Course. She is registered with HCPC, CSP, APCP and BABTT.

Kirsty has been a clinical educator, support staff trainer and BLS Cascade Trainer. She now organises tutorials and has presented a poster at the EBTA Conference 2018 on parents’ perceptions of home programs.

Laura gained her professional physiotherapy qualifications in the UK and is an alumni of Teachers College Columbia University (MA in Motor Learning). She has a keen interest in care provision through translation of sound research into clinical practice for individuals with neurological dysfunction resulting from cerebral palsy, chromosomal deficiencies or neurodegenerative conditions. A specific emphasis is placed on maximizing functional ability and minimizing secondary sequalae through surveillance, intervention and appropriate postural support as part of a multi-disciplinary team.

Laura is a strong advocate for the education and empowerment of parents through established international standards of care, to enable them to be proactive in the provision of healthcare for their child in a sound and timely manner.