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 within the United States and worldwide.
There are only 2 VWM research projects in the world, one in Tel Aviv run by Professor Orna Elroy-Stein and the other in Amsterdam run by Dr. Marjo van der Knaap. We are excited to share that both projects have made real progress and have identified compounds that might actually stop the progression of VWM. Professor Orna Elroy-Stein is funded for the next year thanks to VWM families. Dr. van der Knaap’s, on the other hand, has been put on hold for a year while they submit grant applications and wait for the money to come through, assuming the applications are successful.
Waiting a year for funding is not an option for VWM families. A year is life or death for our kids. Neither of these treatments 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.
So now it is up to the VWM Families Foundation to raise the money to keep these projects going. We have an ambitious goal of raising $1 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.
The VWM Families Foundation, INC is a registered 501(c)(3) charitable organization