Registration now open!


Our ULF Conference brings together families and medical professionals across all of the leukodystrophies. Don’t miss this opportunity to learn, share, and connect! Doctors and researchers will be present to speak with parents and affected adults one on one! 
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About Us
The United Leukodystrophy Foundation (ULF), incorporated in 1982, is a non-profit, voluntary health organization dedicated to funding cutting-edge research and to providing patients and their families with disease information and medical referrals. The Foundation is located in DeKalb, Illinois.  
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Recent News
14May 2019

by Annika Jorgensen I am his mother (from Sweden) and he has an American father, Marcy. We have two daughters Amanda and Johanna, who are both older than Nicki. We were divorced before Nicki turned ill and his father lives in ...Read More

07May 2019

by Alan Fingeroot Our son Andy died of Canavan disease when he was 15 years old. This is our story. No parent should have to endure the heartache of a child affected with a Jewish genetic disease. These diseases are preventable ...Read More

01May 2019

The ULF received donations in memorial or honorarium for the following during the month of April 2019. We apologize for any inadvertent omittance or misspellings. Please notify us if we have made a mistake at or by calling 815.748.3211. IN ...Read More