What is the Global Experts Network?
We want to stay informed about current developments and trends of importance in the field of Spina Bifida and Hydrocephalus, and encourage further research to improve the quality of life of persons born with these conditions and reduce the incidence of Spina Bifida and Hydrocephalus by primary prevention.
To this end we are currently developing a Global Experts Network on Spina Bifida and Hydrocephalus, which is steered by a newly established Global Experts Panel. IF President Margo Whiteford is the Chair of this Panel and facilitates the communication with the IF Board.
We grouped all necessary specialties in Spina Bifida and Hydrocephalus in 6 domains:
- Quality of Life of persons affected with the disabilities: Services and Care, Human Rights and Social Inclusion.
- Prevention of the disabilities: Genetics, Causes and Public Health.
Role of the Global Experts Panel
The members of the Global Experts Panel will advise and represent IF on a broad range of matters in their areas of expertise, including, but not restricted to, newly published research, research proposals submitted to the Bo Hjelt Foundation for Spina Bifida, contributions to press releases or position papers, the preparations of IF’s annual International Conferences (organised by IF) and help develop the Global Experts Network. Members of the Global Experts Panel are considered the public spokespersons for IF on the topic of their specialty. To perform its tasks, the Panel will be able to consult the members of IF’s Global Experts Network, and will receive support from the IF secretariat. The position is considered self-funded. The first meeting of the IF Global Experts Panel was held on Thursday 9 October 2014, the second meeting took place on Saturday 28 March 2015. The GEP met for a third time on Sunday 18 October 2015.
Composition of the Global Experts Panel
Margo Whiteford, Chair | CV
Margo Whiteford, B.Sc., FRCP(Glas) is a Consultant Clinical Geneticist, who works in Glasgow, Scotland. She initially trained in paediatrics and has a special interest in congenital malformations. She provides genetics input for two Managed Clinical Networks in Scotland: one for orofacial clefting disorders and the other for pre-implantation genetic diagnosis.
Margo was elected to the Board of Directors of the International Federation for Spina Bifida and Hydrocephalus (IF) in 2010 and became President in June 2013. She is also Chairperson of the Board of Directors of the Scottish Spina Bifida Association and in 2009 was voted Scotswoman of the Year in recognition of her work for the health service and charity. Margo has personal knowledge of spina bifida having been born with the condition.
Benjamin Warf is Professor of Neurosurgery at Harvard Medical School and holds the Hydrocephalus and Spina Bifida Chair at Boston Children's Hospital, where he is Director of Neonatal and Congenital Anomaly Neurosurgery. He was the founding Medical Director of the CURE Children's Hospital of Uganda from 2000 through 2006, where he developed the ETV/CPC technique for treating infant hydrocephalus. He currently serves as the Medical Director of CURE Hydrocephalus, a specialty program within CURE International that trains and equips neurosurgeons from developing countries to perform ETV/CPC. He also serves on the Board of Directors for CURE International. He was named a MacArthur Fellow in 2012 and used the award to establish the Global Hydrocephalus and Spina Bifida fund at Boston Children's Hospital. He has partnered with IF since 2000, serving as its neurosurgery advisor, and currently serves on the IF Global Experts Panel.
David Nolan Morrissey, Human Rights | CV
David Nolan Morrissey is the Executive Director of United States International Council on Disabilities (USICD) since 2009. He represents and serves as a key spokesperson for USICD publicly, to national and international non-governmental organizations, media, and policymakers within the US Government. Prior to his position at USICD, he worked as project manager at the Association of University Centers on Disabilities (AUCD). David has been a member of the Expert Working Group on Spina Bifida Transition at the Centers for Disease Control and Prevention (CDC).
Amy McPherson, Social Inclusion | CV
Amy McPherson has been a Scientist at Bloorview Research Institute (Toronto, Canada) and Assistant Professor in the Dalla Lana School of Public Health at the University of Toronto since 2009. She was recently appointed as the Co-Lead of the Centre for Leadership in Participation and Inclusion at Holland Bloorview Kids Rehabilitation Hospital (Toronto, Canada). Dr. McPherson's research aims to promote well-being in young people by improving choice and empowerment.
Richard H. Finnell, Genetics | CV
Richard H. Finnell is the McKean-Love Professor of Cellular and Molecular Sciences in the Department of Nutritional Sciences at the University of Texas at Austin, and serves as the Director of Genomic Research at Dell Children's Medical Center. He is also an Adjunct Professor in the Shanghai Institute of Medical Genetics of Shanghai Children's Hospital and at the Institute of Reproductive and Child Health at Peking University Health Science Center. Prof. Finnell is a faculty member of the Center for Collaborative Innovation in Development and Genomics at Fudan University in Shanghai, as well as serving as an Foreign Consultant to the School of Life Sciences at East China Normal University. A pediatric geneticist, he has a distinguished career researching environmentally induced birth defects, applying stem cell technology to the detection/prevention, understanding, and treatment of complex congenital anomalies, particularly neural tube defects. During his 30+-year career, he has authored close to 300 publications in journals such as Science, Nature Genetics, Nature Cell Biology, PNAS and Developmental Cell. His work with murine embryonic stem cells established the dire embryonic consequences of folate deficiency during embryonic development.
Anne Molloy, Causes | CV
Anne Molloy is Associate Professor in the Discipline of Clinical Medicine, School of Medicine and Director of the Vitamin Research Laboratory, Trinity College Dublin in Ireland. She has 30 years' experience in researching the molecular, nutritional and genomic factors that influence folate, vitamin B12 and related micronutrient function within the body. She has particular interest in understanding the role of folic acid in prevention of neural tube defects. In this research, her laboratory has received major funding over nearly twenty years and continues to collaborate with two institutes of the National Institutes of Health in the USA, both Eunice Shriver National Institute for Child Health and Human Development (NICHD) and the National Human Genome Research Institute (NHGRI). She has more than 150 peer-reviewed publications and over 20 reviews, editorials and book chapters. She is an associate editor of several nutritional journals and has served on expert advisory panels for the World Health Organization, the Food Standards Agency in the UK and the US Office of Dietary Supplements.