VWM Families Foundation
Supporting Vanishing White Matter Disease Research and Families
Who We Are
Vanishing White Matter disease
(VWM) is a very rare neurological
condition that destroys myelin, the
brain’s white matter. In doing so, it
permanently affects transmission of
brain signals to the rest of the body.
VWM primarily affects children and is
untreatable, incurable, and terminal.
In 2016, the VWM Families Foundation
was formed to raise awareness of
VWM, to raise money for research, and
to support families living with VWM
worldwide.
What is VWM?
Vanishing White Matter disease (VWM) is a very rare neurological condition that destroys myelin, the brain’s white matter. In doing so, it permanently affects transmission of brain signals to the rest of the body. VWM primarily affects children and is untreatable, incurable and terminal.
VWM causes the white matter in the brain to disappear, being replaced with water. The loss of white matter means signals are no longer getting to the rest of the body from the brain and causes a loss of motor control.
Patients usually lose the ability to walk or stand first, followed by slow speech, spastic hand movements, incontinence, loss of hearing, loss of vision, seizure and coma, among other symptoms
VWM progresses slowly over time, but a sudden decline can be caused by any stress on the brain, including a head bump, fever, anesthesia, medications or even a scare.
