Here you will find our entire team. It consists of the PCH2cure project leads, additional staff and the board of PCH-Familie e.V.
“A truly powerful team”
Prof. Dr. Annette Grüters-Kieslich, chairwoman of the Eva Luise und Horst Köhler Foundation, in her laudatory speech at the presentation of the 15th Eva Luise Köhler Research Award on the collaboration between PCH-Familie e.V. and the research community
Lead Scientists of the PCH2cure Project
Credit: Andrea Katheder
Dr. Julia Matilainen
Chief Scientific Officer and founding member of the PCH2cure project.
Julia Matilainen has a child with PCH2 and acts as Chief Scientific Officer for the PCH-Familie e.V. association. Her primary goal is to find treatment options for children with PCH2 in the near future.
Dr. Julia Matilainen
Chief Scientific Officer and founding member of the PCH2cure project.
Julia Matilainen has a child with PCH2 and acts as Chief Scientific Officer for the PCH-Familie e.V. association. Her primary goal is to find treatment options for children with PCH2 in the near future.
Julia Matilainen obtained her PhD in Pharmaceutical Technology at the University of Düsseldorf, Germany. She works in the pharmaceutical industry in drug development, specifically in the field of cell and gene therapies.
Lead Scientist and founding member of the PCH2cure project.
Simone Mayer is a professor at the Karlsruhe Institute of Technology (KIT) and research group leader for Molecular Brain Development at the Hertie Institute for Clinical Brain Research in Tübingen, Germany.
Prof. Dr. Simone Mayer
Lead Scientist and founding member of the PCH2cure project.
Simone Mayer is a professor at the Karlsruhe Institute of Technology (KIT) and research group leader for Molecular Brain Development at the Hertie Institute for Clinical Brain Research in Tübingen, Germany. Her research group studies the disease mechanisms of PCH2 using cerebellar organoids with various methods ranging from single-cell analysis to high-resolution microscopy. Her aim is to apply knowledge about molecular and cellular mechanisms in human brain development to PCH2, and to use cellular models to study how genetic alterations in the TSEN54 gene influence brain development.
Simone Mayer holds a BA in Natural Sciences from the University of Cambridge, UK and an MSc and PhD (Dr. rer. nat.) in Molecular Biology from the Georg-August-University Göttingen, Germany. She has also worked in neuroscience research groups at Yale University, the Max Planck Institute for Experimental Medicine, and the University of California, San Francisco.
Project Lead and founding member of the PCH2cure project.
Wibke Janzarik is an attending physician and head of the neuropediatric clinic at the Department of Neuropediatrics and Muscular Disorders at the Medical Center of the University of Freiburg, Germany.
PD Dr. Wibke Janzarik
Project Lead and founding member of the PCH2cure project.
Wibke Janzarik is an attending physician and head of the neuropediatric clinic at the Department of Neuropediatrics and Muscular Disorders at the Medical Center of the University of Freiburg, Germany. Her focus is on rare neurogenetic diseases, early motor disorders and neurodegenerative diseases in children. At PCH2cure, Wibke Janzarik is responsible for collecting clinical data and maintaining a biobank. Her research focuses in particular on the gastrointestinal symptoms of patients with PCH2A and the underlying pathophysiological changes.
Samuel Gröschel is an attending physician at the Department of Neuropediatrics, Developmental Neurology and Social Pediatrics at the University Hospital of Tübingen, Germany.
Prof. Dr. med. Samuel Gröschel
Project Lead at PCH2cure.
Samuel Gröschel is an attending physician at the Department of Neuropediatrics, Developmental Neurology and Social Pediatrics at the University Hospital of Tübingen, Germany. He conducts research on rare neurological diseases in childhood, leads the clinical research on PCH2 in Tübingen and studies the brain connectivity of children with PCH2 using MRI.
Lea Hüper has an MSc in Neuroscience and experience in clinical and preclinical research.
Lea Hüper
Project Manager at PCH2cure.
Lea Hüper has an MSc in Neuroscience and experience in clinical and preclinical research. As part of her work in the PCH2cure project, she coordinates the exchange between team members from research, the clinical sector and the patient organization.
Saskia Frölich is a medical doctor with several years of experience in pediatrics and child and adolescent psychiatry.
Dr. Saskia Frölich
PCH2cure team member
Saskia Frölich is a medical doctor with several years of experience in pediatrics and child and adolescent psychiatry. She wrote her doctoral thesis on the “natural history of pontocerebellar hypoplasia type 2” at the University of Tübingen and was involved in the publication of the first parent brochure.
Saskia Frölich is the mother of five children.
She writes website texts for the PCH2cure project and is working on the parent brochure 2.0.
Founding member of the PCH-Familie e.V. association and volunteer administrator, moderator for web services and adviser on social media topics.
Father of two daughters, the older of whom has PCH2.
Dirk Strecker
Founding member of the PCH-Familie e.V. association and volunteer administrator, moderator for web services and adviser on social media topics.
Father of two daughters, the older of whom has PCH2.
Dirk Strecker blogs on the subject of outpatient intensive care from a caring parent’s perspective and has been active in support groups for children with neurological diseases both locally and online since 2004. He is a regional representative of the nationwide association INTENSIVkinder zuhause e.V.
Dirk Strecker is a registered nurse with qualifications in pediatric palliative care and coordinator of a children’s hospice service. He has been working in nursing management for 15 years, initially for pediatric intensive care services and currently for his daughter’s team.
First Chairman of the PCH-Familie e.V. Association
Axel Lankenau is the father of two teenage boys with PCH2, moderator of the German PCH bulletin board and founding member of both PCH-Familie e.V. and PCH2cure.
Dr. Axel Lankenau
First Chairman of the PCH-Familie e.V. Association
Axel Lankenau is the father of two teenage boys with PCH2, moderator of the German PCH bulletin board and founding member of both PCH-Familie e.V. and PCH2cure. In addition to his enthusiasm for research, he is committed to making people with severe multiple disabilities visible to and part of society.
Axel Lankenau holds a doctorate in computer science and, after 20 years in the automotive industry, has started his own business advising families with children requiring intensive care.
Second Chairman of the PCH-Familie e.V. Association
Marco Habermeier is the father of a daughter with PCH2 and a founding member of the PCH-Familie e.V. association, where he organizes regular family meetings, among other things.
Marco Habermeier
Second Chairman of the PCH-Familie e.V. Association
Marco Habermeier is the father of a daughter with PCH2 and a founding member of the PCH-Familie e.V. association, where he organizes regular family meetings, among other things.
Marco Habermeier studied electrical engineering and works in the automotive industry.
Cornelia Strecker is the mother of an adult daughter with PCH2. She started the digital exchange among families in 2006 and promotes the networking of families on the German-speaking parents’ bulletin board.
Cornelia Strecker
Kassenwartin des Vereins PCH-Familie e. V.
Cornelia Strecker is the mother of an adult daughter with PCH2. She started the digital exchange among families in 2006 and promotes the networking of families on the German-speaking parents’ bulletin board.
Cornelia Strecker is a pediatrician in private practice.
