Welcome

Hello!

Welcome to this new section of the ULF web site. I am Bill Kintner, ULF Vice-President and a parent of a child with MLD(now deceased). With my wife, Colleen, we have been the vice-presidents of the ULF for more than twenty years.

When we joined the ULF, medical science did not know for sure where the defective gene was located for MLD. It has been an amazing two decades of fast paced and thorough research to bring us to today, with MLD and other leukodystrophies. With the mapping of the entire human genome, and much other laborious effort, serious microbiology and resultant therapies are now beginning to unfold. Gene replacement and enzyme replacement therapies are emerging to join bone marrow transplants as possible treatment for certain patients.

The ULF was first on the scene to promote cooperation and sharing among researchers in the scientific community. There is nothing like the model we have developed over many years for our annual family conference and scientific meeting which is held near Chicago each summer. Focus meetings for specific white matter diseases are also conducted from time to time as new therapies and medical advances emerge.

The ULF is committed to partnership with researchers and physicians world wide to provide the most competent network of medical information and treatment availabe to those stricken with leukodystrophy disease.

Family members and researchers interact together as the newest advances are shared and, in some cases, rare white matter diseases are properly diganosed by an expert panel of physicians from all over the world.

If you or someone you know, family member or friend, is affected by leukodystrophy, then the ULF is a place where you belong. You will be kept informed and nurtured along the way with accurate and timely information and support. Please let us hear from you! You participation is valued highly and is very important to all of us in the ULF family.