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VWM Families Foundation

Supporting Vanishing White Matter Disease Research and Families

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Who We Are

In 2016, the VWM Families Foundation was formed to raise awareness of Vanishing White Matter disease, a rare neurological condition. The VWMFF has an ambitious goal of raising $2 million over the next year to fund two promising research projects and support families living with VWM with necessary medical expenses not covered by insurance.

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Every day without a cure means life or death for children with VWM. It is up to us to fund critical research and save their lives.

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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.

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