Who We Are

Located in DeKalb, Illinois, the United Leukodystrophy Foundation (ULF), is a nonprofit, voluntary health organization dedicated to providing patients and their families with information about their disease and assistance in identifying sources of medical care, social services, and genetic counseling. The ULF works to establish a communication network among families; as well as increases public awareness and acts as an information source for health care providers by promoting and supporting research into causes, treatments, and prevention of the leukodystrophies. Leukodystrophies comprise a group of genetic nervous system disorders affecting the myelin sheath, which insulates the axon through which nerve impulses are conducted.

Every year, the ULF puts a call out to the leukodystrophy medical professional community asking for research proposals in need of funding. The number of grant applications have consistently grown in the past years with submissions coming in from all over the United States as well as internationally. Proposals are considered by our Medical and Scientific Advisory Board and ranked based on merit and potential impact to the field. Thanks to your generous donations, the ULF has been able to grant $215,000 for medical research since 2015.

Incorporated in 1982, the United Leukodystrophy Foundation is solely supported and funded by donations.

2017 ULF Disclosure Statement

2018 IRS Form 990

2018 Audit Report

Federal Tax Identification Number/EIN: 35-1557361

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