There are only a handful of VWM research projects in the world. The two main research projects are run by Professor Orna Elroy-Stein in Tel Aviv and by Dr. Marjo van der Knaap in Amsterdam. Both projects have made real progress recently and have identified compounds that might actually stop the progression of VWM. Professor Elroy-Stein’s work is currently funded for the next year, so the VWM Families Foundation is currently focused on supporting Dr. van der Knaap’s work.
Because VWM is such a rare disease, there is no external funding available to support these projects. This means that both of these projects are being entirely funded by VWM families throughout the world.
Neither potential treatment will be able to reverse any damage that has been done, meaning we need to rush this research as much as possible to preserve what motor skills our children have left and save as many lives as possible.
We have a goal of raising $2 million over the next year to ensure that these projects remain fully funded and can hopefully be expedited.
Supporting VWM Families
VWM causes the white matter in a patient’s brain to literally disappear and be replaced with water. With it a patient loses motor control. This results in all patients having severe physical disabilites and will inevitably lose the ability to walk.
Many people are suprised to hear that necessary medical equipment is often not covered by insurance. This can include motorized wheelchairs, feeding chairs, bathing seats, and standers.
In addition, as a child with VWM gets older it becomes impossible for families to include their VWM child in everyday life without disabled access in and out of the home and a wheelchair van to get their child around without having to lift them out of a wheelchairs. These things are not covered by insurance and families are expected to pay for them out of pocket. The financial burden on top of the stress of a sick child is more than families should have to bear.
We aim to help families by helping fund this necessary equipment and ease their financial burden.
Donate: It is up to the VWM Families Foundation to raise the money to keep these projects going.
We have an ambitious goal of raising $2 million in the next year. We are so grateful for all the efforts and contributions to date and know with your help we will reach our goal.