Editorial board of ALD info

Marc Engelen received his MD from the University of Amsterdam, the Netherlands in 2002. He was trained as a neurologist and subsequently subspecialized in pediatric neurology at the Amsterdam University Medical Centers. In 2012, Dr. Engelen obtained a PhD on “Translational studies in Adrenoleukodystrophy”. He is currently a member of the medical staff of the Department of Neurology and the Department of Pediatrics at Amsterdam UMC. Marc has a special interest in peroxisomal disorders. In 2015, the Amsterdam UMC was designated the national expert center for this group of diseases. His research focuses on adrenoleukodystrophy and in 2019 he received a Vidi grant from NWO (Netherlands Organization for Scientific Research) to study the natural history of adrenoleukodystrophy and identify predictive biomarkers for the onset of cerebral adrenoleukodystrophy.

Rachel Salzman serves as Chief Scientific Officer of The Stop ALD Foundation (SALD), and has held this position since 2001. SALD is a non-profit Medical Research Organization dedicated to employing entrepreneurial approaches and innovative methodology towards effective therapies, cures, and prevention of adrenoleukodystrophy. The biomedical interests of the Foundation include gene therapy, hematopoietic stem cells, mesenchymal and other adult stem cells, genomics, and small molecules. Rachel also consults for large pharma and biotech in the field of drug development, including preclinical and clinical analysis in a variety of therapeutic areas. This consultancy includes advising veterinary pharmaceutical developers and food production industry on nutritional supplements, preventive healthcare, and animal housing conditions/other welfare practices. Prior to these roles, Rachel worked in private veterinary practice in both large and small animal medicine for over 10 years. She has a D.V.M. from Oklahoma State University and a B.S. from Rutgers University.

Virginie Bonnamain currently serves as Clinical Scientist at Glycostem Therapeutics, where she manages clinical and project management activities for NK-cell based immunotherapy studies for oncology indications. Virginie has more than 12 years’ experience in Life Sciences R&D and project management, including 6 years in drug development, rare diseases and cell & gene therapy, acquired when working at various academic institutions (University of Nantes Medical School, Mount Sinai School of Medicine and the Cleveland Clinic) and at biotech companies. In particular, she worked as Clinical Project Manager for a gene therapy study for Adrenoleukodystrophy, and she also contributed to the development of a European academic Consortium for Adrenomyeloneuropathy, aimed at improving patient care and disease understanding. Virginie received a MSc in Biological & Medical Sciences in 2006 and a PhD in Neuroimmunology in 2009 from the University of Nantes, France. She published 18 scientific publications/book chapters.

Stephan Kemp is an Associate Professor at the Amsterdam University Medical Centers (location AMC), University of Amsterdam, the Netherlands. He was trained as a translational researcher at Johns Hopkins University/ Kennedy Krieger Institute, Baltimore, Maryland, USA and obtained his PhD in 1999 at the University of Amsterdam. Dr Kemp has more >20 years of experience with adrenoleukodystrophy research and published >80 papers and book chapters on adrenoleukodystrophy. In 1999, together with Dr. Hugo Moser, he initiated the ALD database (www.x-ald.nl), which moved to www.adrenoleukodystrophy.info in 2017. He is scientific adviser of the Dutch ALD patient organisation and the Stop ALD Foundation, member of the Panel of Experts of Alex TLC (UK), member of the scientific board of the European Leukodystrophy Association (ELA) and a member of the board of directors of ALD Connect. Dr Kemp is the project leader of the SCAN study; the pilot for implementing ALD newborn screening in the Netherlands. In 2015, he received the AMC Societal Impact Award (ASIA). His research focuses on lipid metabolism and neurotoxicity.

Last modified | 2019-10-26