What is the United Leukodystrophy Foundation?
The United Leukodystrophy Foundation was founded in 1982, and is a 501[c] [3] Indiana Corporation. The national headquarters is in Sycamore, Illinois. Because of the size and scarcity of population, there are no chapters; however, networking and support groups are encouraged. We have members in all 50 states and are in communication with over 50 countries. Membership includes families and professionals, numbering over 15,000. Our Board of Directors is a mix of professionals and non-professionals; nearly all have affected family members. Officers serve three-year terms which are staggered for continuity. The Medical and Scientific Advisory Board consists of medical doctors, neurologists, biochemists, pediatricians, geneticists and other disciplines. All are leaders in the field and most are internationally renowned.
