Hearing the words Leukodystrophy or Vanishing White Matter disease can feel isolating. We remember having many questions and not feeling like we had anyone to turn to. With VWM, there is never a black-and-white path to navigating the disease; everyone's disease experience seems slightly different. However, it can be helpful to connect with other families that may have similar experiences.
We would love to help you connect if this is something you would find helpful please fill the form out below and we will reach out with more information on connecting with other VWM families.