Center for children with white matter disorders

Since Magnetic Resonance Imaging (MRI) and Magnetic Resonance Spectroscopy (MRS) became available at the VU University Medical Center in Amsterdam in 1985, the Departments of Child Neurology (Dr. Marjo S. van der Knaap) and Neuroradiology (Dr. Jaap Valk) have collaborated in the analysis of white matter disorders. It soon became clear that the pattern of MRI abnormalities was different for different disorders and that, therefore, MR images could provide useful information about the diagnosis in a patient with a white matter disorder. Based on this information, an MRI  "pattern recognition" program was developed that proved to work and has received worldwide recognition since. Subsequently, the program was applied to unclassified white matter disorders and has been able to contribute to the definition of several new disorders. They have published many articles on the subject of white matter disorders and a book (Magnetic Resonance of Myelin, Myelination and Myelin Disorders, Springer Verlag, 1995), worldwide considered as a standard text in the field. They have been awarded the gold medal of the International Society of Magnetic Resonance in Medicine for pioneering work on Magnetic Resonance of neurodegenerative and neurometabolic disorders of children. Over the years, a growing number of children with a white matter disorder were referred to the VU medical Institute and many MRI's of such children were sent for a second opinion. In 2000, it was decided to establish a Center for Childhood White Matter Disorders at the VU Medical Institute. 

The purpose of the Center is to optimize diagnostics and patient care for children with a white matter disorder and to perform research on the subject.

Collaboration with other centers

The Center for Childhood White Matter Disorders has ongoing collaborations with many child neurologists around the world and with the American patient and parent organization, the "United Leukodystrophy Foundation". The research of the center is embedded in the Institute for Clinical and Experimental Neurosciences and is supported by the VU University Medical Center. 

For studies on the mechanisms underlying some of the childhood white matter disorders we also have several collaborators. We work together with Dr. Chris Proud (Vancouver, Canada) and Dr. Jim Powers (Rochester, USA) on vanishing white matter disease. Together with Prof. Steve Goldman (Rochester, USA) we are studying white matter progenitor cells. We hope that such cells can be used for the treatment of some of the white matter disorders in the future. For studies on LBSL we are collaborating with Prof. Catherine Florentz (Strasbourg, France) and Prof. Rudy van Coster (Gent, Belgium). Together with Dr. Estevez (Barcelona, Spain) we are studying the effects of mutations in the protein MLC1.

What can you do for the center?

It is difficult to obtain financial support for studies on white matter disorders in children. The argument is often used is that the diseases are too rare and the impact of investing money in this research is relatively small as compared to research on widespread diseases such as cardiac infarctions, cerebrovascular abnormalities, multiple sclerosis, and cancer. This point neglects the fact that although these disorders are rare, there are so many  rare disorders that as a group they are not so rare. It is estimated that all white matter abnormalities together occur with a frequency of 1 in 1000 children. This is close to the frequency of multiple sclerosis in adults.
For our studies and to run the center, a team of dedicated physicians and researchers is mandatory, including pediatric neurologists, geneticists, neuroradiologists, biochemists, molecular biologists, neuropathologists, computer experts and physicists. We also need state-of-the-art equipment to provide all tests necessary and to advance our studies.
Saying all this, it means that the center is in want of money, a lot of money. If you know means to help the center, you are very welcome. Please note that the expert center is a registered foundation, for which the explicit ruling goes that no personal gain or profit can be made by any of the participants. All money you contribute will only serve the patients.