VU Medical Center Foundation is dedicated to raise funds for patient care, scientific medical research and education at the VU medical center in Amsterdam, the Netherlands. We focus our efforts on funds for Alzheimer's Disease, MS and VWM.

he VU Medical Center Foundation was founded in 2000 to act as the fundraising organisation for the VU Medical Center in Amsterdam. The VU Medical Center is one of 8 university medical centers in the Netherlands. As an university medical center our main activities is patient care, scientific medical research and education of medical doctors and nurses. The Foundation raises - together with her sister foundation VUmc CCA - funds for all the activities of the VU Medical Center and focusses its activities on Neurology (eg Alzheimer's Disease, MS, Vanishing White Matter). The last 15 years the Foundation grew to an yearly revenue of 3 million euro.

The Foundation raises funds from private donors, foundations, companies and other organisations e.g. Rotarians. 

The Foundation is registered charity in the Netherlands since 2008 and therefor eligible for tax reduction for gift in the Netherlands. The Foundation has an independent board of director and a supervisory board. VUmc Foundation is being serviced by a small team of professional, dedicated fundraisers.

The Center for Alzheimer's Disease of the VU medical center is the larges center in the Netherlands, It's director, prof.dr. Philip Scheltens, MD, is one of the leading researchers of Europe. The Center focusses on the early onset of Alzheimer's Disease and other forms of dementia. The Center is leading in the Dutch Delta Plan against Dementie

The VUmc MS Center Amsterdam is also the largest academic center in the Netherlands. Almost all patients in the Netherlands are visiting this center at least once. The research of VUmc MS Center is ranked among the leading MS centers in Europe. In addition to treating the the physical complications of MS, the center focusses on fundamental research of MS and reseach and treatment of cognitive effects of MS 

Prof.dr Marjo van der Knaap is the world leading expert Vanising White Matter, an serious life threatening disease for children. She was awarded the Dutch Spinoza Award (1.5 million euro)  in 2008 for her work. This award is regarded as the highest medical prize of the Netherlands. 

The Fund also acts a the fundraising infrastructure for other departments of the VU Medical Center in Amsterdam. All philanthropic donations for the VU medical center are being channelled through the foundation. 


Stichting Amsterdam UMC Foundation (NL)

Advancing Research on the Rare Disease MLC (Megalencephalic Leukoencephalopathy with subcortical Cysts). 

Megalencephalic Leukoencephalopathy with subcortical Cysts (MLC) is a rare genetic disorder, affecting the white matter of the brain. It was described for the first time in 1995 by the 'Amsterdam Group' of the Amsterdam University Medical Centers, led by Marjo van der Knaap, a Dutch professor of pediatric neurology and winner of the 2008 Spinoza Prize whose research focuses on white matter disorders.

MLC is a progressive condition that affects brain development and function. It is characterized by a larger than usual head circumference in children (infantile-onset macrocephaly), followed by slow motor and cognitive decline. The condition impacts the ability to use muscles, leading to mobility problems. While some lose the ability to walk early in life, others continue to be able to walk unassisted well into adulthood. However, most patients become wheelchair-dependent as teenagers.

People with MLC typically have a shorter than average lifespan, with some individuals succumbing to the disorder in their teens or twenties and others as late as their fifties.

Currently, there is no therapy or treatment available for patients with MLC, however insights into the disease mechanisms of MLC are rapidly increasing. This understanding is critical as it forms the basis of future therapeutic developments. Patient registries are a key tool for scientists researching rare diseases. Understanding the data gathered from these registries is critical to improve treatments. The only clinical database comprising a significant number of patients is the database from the Amsterdam University Medical Centers.

Goals

1. Form an international consortium on MLC.
2. Create an international registry for MLC patients.
3. Use this registry to advance MLC research through a natural history study.

Activities

The existing Amsterdam database will be transformed into an e-clinical data management platform (a Castor-based registry). With the approval of the Amsterdam Ethics Committee and consent from participating families, the international consortium of clinical experts on MLC will determine what information should be collected.

Once the data is obtained, a natural history study that will follow the participants over a pre-determined length of time, will be launched.

Researchers around the world will have access to the international registry for MLC patients, enabling them to study clinical details, genetic findings and MRI's. The results of the study will be published and available online.

Key Performance Indicators to be reached (KPIs)

– The successful creation of an international consortium
– The successful creation of an international registry for MLC patients
– The execution of a study using the registry data.

KBF US is working with the Emma Children Hospital Foundation (Stichting Steun Emma Kinderziekenhuis) on this project, a non-profit organization based in Amsterdam (Netherlands) which supports the Emma's Children Hospital and innovative research projects.

About Alliance MLC 
Alliance MLC is a nonprofit organization founded in 2023 to help connect families around the globe that are affected by MLC). Alliance MLC was created by a group of determined, action-oriented and ambitious parents who share the dream that one day every person affected by MLC will have the chance to live a long and healthy life. We are committed to providing ongoing support for our families, as well as accelerating progress of MLC research with the ultimate goal of one day developing a treatment. Research is currently ongoing in various cities globally but before this research goes to the next stage of clinical trials, it is imperative that we have a patient registry up and functional. 

Alliance MLC and VU Medical Center Amsterdam

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