Please note that events are listed for Central Time Zone (Chicago). Upcoming Events Sep 21 Featured 8:00 pm - 9:00 pm EDT Monday 9/21/26 Online Caregiver Support Group Sep 27 Featured 1:00 pm - 2:00 pm CDT ULF Webinar: All About IEP’s Oct 11 1:00 pm - 2:00 pm EDT Sunday 10/11/26 Online Caregiver Support Group Nov 16 Featured 8:00 pm - 9:00 pm EST Monday 11/16/26 Online Caregiver Support Group Dec 13 Featured 1:00 pm - 2:00 pm EST Sunday 12/13/26 Online Caregiver Support Group View Calendar Recent Posts JLR Research Article: Spatial and temporal brain biodistribution of neuropathogenic sphingolipids of Krabbe disease iScience Article: Sphingolipid-neutralizing molecular thereapy reduces psychosine cytotoxicity in Krabbe Disease Journal News article: Mapping toxic lipid buildup in a rare neurological disease Finding Answers, Finding Community: Tilyn’s Journey with TUBB4A Leukodystrophy Finding Our Village: Our Journey with Alexander Disease Research Summaries December 2025 ULF Awards $33,000 Research Grant to Advance Gene Therapy for H-ABC Historic Expansion of Newborn Screening Includes MLD Eden’s Story: Helping Families and Supporting Research Through Her Legacy Hope in Action: ULF Board Member’s Son Receives World’s First SLC6A1 Treatment Read More News Share your story Read Stories
