Vanishing White Matter Disease (VWM) affects the white matter, or myelin, of the brain known collectively as Leukodystrophies. VWM is an extremely 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. As the disease progresses, Nash can expect some or all of the following symptoms: loss of motor skills (walking usually goes first, followed by ability to sit unassisted, speech, use of hands, head control and ability to swallow), loss of vision, epileptic seizures, vomiting, irritability, and comas leading to death at an early age.
Vanishing White Matter is a terminal disease with no cure but there is hope with the first human clinical trials taking place right now. We believe Nash will see a cure 💚 Our hope for this run is to show Nash our love and support, raise awareness of VWM, take care of our family and any financial need, and to find a cure by funding research.