ABOUT

Vanishing White Matter Leukodystrophy (VWM) is a rare genetic disease that affects the central nervous system. 

This site is designed to raise awareness. All proceeds from print sales will be donated to the Vanishing White Matter Foundation.

Visit VWMfoundation.com to learn more and donate directly.

Two of my cousins, Annabelle and Gabrielle, have been diagnosed with this rare disease. We're so grateful for their amazing spirit and determination over all of the years. With your help, Landon and I are doing what we can to support these incredible women and other individuals that have been affected.

The big news this year is that VWM researchers are very close to starting a clinical drug trial, perhaps as early as the spring 2019!

We are currently raising funds for Dr. Marjo van der Knaap at VU University in the Netherlands, and Dr. Joshua Bonkowsky at the University of Utah.

Because VWM is such a rare disease, there are only a few VWM research projects worldwide and research funding is very difficult to obtain. The number of patients diagnosed is in the hundreds worldwide.

During the past year, the VWM Foundation has provided research grants to the van der Knaap and Bonkowsky labs totaling $67,000... thank you so much for your support.