The VWM Registery is officially open! The Center for Childhood White Matter Disorders at the VU University Medical Center (VUmc) in Amsterdam, The Netherlands, has developed an online Registry for patients with Vanishing White Matter (VWM). The aim of the Registry is to collect as much insight in the disease course as possible, regarding both clinical …
Online Registry for Vanishing White Matter Now Available! Read More »
by John Wolf The ULF has been a part of my life for nearly 14 years. My involvement began shortly after my daughter, Ashley was diagnosed at the age of 10 with Cerebrotendinous Xanthomatosis (CTX) in 1994. After the initial shock of the diagnosis wore off, we took it upon ourselves to learn as much …
The ULF received donations in memorial or honorarium for the following during the month of November 2018. We apologize for any inadvertent omission or misspellings. Please notify us if we have made a mistake at office@ulf.org or by calling 815.748.3211. IN HONOR OF Liam Becker: Amy Becker Nathan and Kathryn Borge: John and Karen Sheahan Alex Bouley: Bernard and …
