About us
The purpose of the Center for Children with White Matter Disorders is to optimize diagnostics and patient care for children with a white matter disorder and to perform research on the subject. 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".
Research
The research of the center is embedded in the Institute for Clinical and Experimental Neurosciences and is supported by Amsterdam UMC, location VUmc.
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.
For more information about research, visit amsterdamumc.org/research
For more information about research output registration, visit researchinformation.amsterdamumc.org
What can you do for the center?
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.
- If you would like to support our Center, please click here.
Foundation for children with white matter disorders
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).
Account details
Foundation for Children with White Matter Disorders
ABN-AMRO bank account nr.: 573559406
Postbank accountnr: 6683861
Kamer van Koophandel 34137374
Patient Care
Supportive care is very important in white matter disorders. First of all, physical therapy and special education are almost always necessary. Often, more intensive rehabilitative treatment is required. Psychological support is essential.
For more information about patient care, visit amsterdamumc.nl
Team
For information about our researchers, visit amsterdamumc.org/en/research/researchers
Career
We are always on the lookout for talented and passionate people to join our growing team. You will have the opportunity to develop any aspects you are interested in.
See all our vacancies (in Dutch): werkenbij.amsterdamumc.org
Contact
Prof. dr. M.S. van der Knaap, director
Amsterdam UMC, location VUmc
Child Neurology
Policlinics of Pediatrics
PK 1Y 046
Postbox 7057
1007MB Amsterdam
The Netherlands
Telephone: 020 - 4444856
E-mail: whitemattercenter.info@vumc.nl