The national headquarters is in Sycamore, Illinois. Because of the size and sparsity 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 nearly 3,000 families and over 1,500 professionals.
Officers serve three-year terms which are staggered for continuity.
The Medical and Scientific Advisory Board consists of medical doctors, neurologists, biochemists, pediatricians, genetisists and other disciplines. All are leaders in their field and most are internationally renowned. The ULF is primarily a family support group that offers much help with problems of the family from medical to coping. Educational activities and resources are extensively provided. The ULF provides available funds to research projects when approved by the Medical and Scientific Advisory Board.