About the foundation
Foundation for children with white matter disorders
On the other pages in this website, details are given about the frequency of white matter disorders and the causes found so far for these disorders. In about 50% of children with a white matter disease no specific diagnosis can be made, despite extensive laboratory testing. The cause of the disease in these children is unknown. This means that parents are confronted with the fact that their child has a disease, but that their physician can not give them information on the name of the disease, the future perspectives, about the risks of recurrence in following pregnancies, and cannot provide a treatment. Without a name, the disease is like an enemy without a face. The uncertainty is difficult for parents to live with.
The search for "new" diseases in the group of unclassified white matter disorders in children has a long history at the Department of Child Neurology, "Vrije Universiteit Medical Center". A systematic MRI approach, in practice since 1987, has made it possible to identify a number of new, not previously described white matter disorders. With the support of the Vrije Universiteit Medical Center and grants from the NWO (the Dutch NIH), the Prinses Beatrix foundation, the Phelps foundation for spastics, and the Brain Foundation, we succeeded in the last few years in identifying the genes for two of the newly found diseases. The importance of our findings has obtained international recognition and attention. In two other newly recognized disorders we are still searching for the responsible genes. The discovery of a gene and defective protein for a disease means that the disease can be diagnosed with certainty, that prenatal diagnosis is possible and that further steps can be taken to find a treatment for the disease. In order to achieve that, we will have to go the long way of finding possibilities for genetic correction of the defect, appropriate environmental measures, dietary means, or ways to bypass the defect when substitution is impossible.
Research is extremely expensive and the costs are often not fully covered by the contributions of the existing foundations. Very often no money is provided for cost of equipment, for benchfee for the researchers, for international collaboration, etc. This lack of money for state of the art equipment and daily necessities slows down the progress of our research and leaves families with affected children longer than necessary in uncertainty.
The mission of the Foundation for Children with White Matter Disorders is to find the money to make it possible to better diagnose and treat children with a white matter disease and to spread information about these disorders.
We invite you to help us to reach our goals. The publication list in this WEB site guarantees you that your money is well spent. We are looking for roughly 100.000 Euros annually for 5 years.
Board of the foundation
The board of the Foundation is formed by:
Prof. dr. Marjo van der Knaap, chairman
Mr. Cees Vogelaar, secretary
Mrs. Mr. Irene Blauwkuip, treasurer
Prof. dr. John Roord, pediatrician
Prof. dr. Jaap Valk, neuroradiologist
The Foundation is registered as a non-profit organization at the Chamber of Commerce in Amsterdam (34137374).
Foundation for Children with White Matter Disorders
ABN-AMRO bank account nr.: 573559406
Postbank accountnr: 6683861
Kamer van Koophandel 34137374