Editorial board of ALD info

Marc Engelen received his M.D. from the University of Amsterdam in the Netherlands in 2002. He was trained as a neurologist and subsequently subspecialized in pediatric neurology at the Amsterdam University Medical Center. In 2012, Dr. Engelen earned his Ph.D. on “Translational studies in adrenoleukodystrophy”. He is currently the head of the Department of Pediatrics at the Amsterdam UMC. Marc has a special interest in peroxisomal diseases. In 2015, the Amsterdam UMC was designated as the national expert center these diseases. That same year, he started the prospective ALD patient cohort, the “Dutch ALD cohort,” which now contains natural history data on more than 180 ALD patients with more than 8 years of follow-up. This has provided insight into the rate of disease progression in ALD in men and women, and a new insights into the occurrence of specific symptoms. These data have significantly contributed to clinical trial readiness and are being used for clinical trial design and prospective biomarker research.

Julie Cohen is a certified genetic counselor with over 15 years of experience in clinical practice and research. She specializes in neurogenetics and leukodystrophies. She is the Director of Genetic Counseling Services at the Kennedy Krieger Institute and an Associate Professor of Clinical Neurology and Genetic Medicine at the Johns Hopkins University School of Medicine. Julie is the dedicated genetic counselor for the Moser Center for Leukodystrophies at Kennedy Krieger, where she provides comprehensive care to individuals and families affected by ALD and other leukodystrophies. She has particular expertise in the genetics of ALD, including interpreting ABCD1 variants and their clinical implications. Julie is a member of the Genomics Core of the Global Leukodystrophy Initiative Clinical Trials Network (GLIA-CTN) and a founding member of the ClinGen Leukodystrophy and Leukoencephalopathy Genomic Expert Curation Panel. Julie earned her graduate degree in genetic counseling from the Johns Hopkins Bloomberg School of Public Health and completed her training at the National Human Genome Research Institute at the NIH in 2009.

Rachel Salzman is the Chief Scientific Officer of the Stop ALD Foundation (SALD), a position she has held since 2001. SALD is a nonprofit medical research organization dedicated to using entrepreneurial approaches and innovative methods to find effective therapies, cures and prevention for adrenoleukodystrophy. The Foundation’s biomedical interests include gene therapy, hematopoietic stem cells, mesenchymal and other adult stem cells, genomics, and small molecules. Rachel also consults with large pharmaceutical and biotechnology companies in the area of drug development, including preclinical and clinical analysis in a variety of therapeutic areas. This consulting includes advising animal health developers and the food manufacturing industry on nutritional supplements, preventive healthcare, and animal housing conditions welfare practices. Prior to these roles, Rachel worked in private veterinary practice for over 10 years in both large and small animal medicine. She holds a D.V.M. from Oklahoma State University and a B.S. from Rutgers University.

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

Stephan Kemp is a Full Professor at the Amsterdam University Medical Center, University of Amsterdam, The Netherlands. He was trained as a translational researcher at the Johns Hopkins University/Kennedy Krieger Institute, Baltimore, Maryland, USA and received his Ph.D. from the University of Amsterdam in 1999. Stephan has more than 25 years of experience in adrenoleukodystrophy research and has published more than 100 papers and book chapters on adrenoleukodystrophy. In 1999, together with Dr. Hugo Moser, he initiated the ABCD1 variant registry (www.x-ald.nl), which moved to www.adrenoleukodystrophy.info in 2017. He is actively involved in patient organizations, serving on medical and scientific boards in Europe and the USA, and as a board member of ALD Connect (USA). Dr. Kemp led the development of a boys-only screening algorithm for ALD as part of the Dutch newborn screening program, leading to nationwide screening from October 1, 2023. He is the recipient of the 2015 AMC Societal Impact Award. His research interests are inherited neurometabolic diseases and newborn screening.

Last modified | 2025-09-04