Please note that events are listed for Central Time Zone (Chicago). Upcoming Events Dec 13 Featured 1:00 pm - 2:00 pm EST Sunday 12/13/26 Online Caregiver Support Group Jan 18 Featured 8:00 pm - 9:00 pm EST Monday 1/18/27 Online Caregiver Support Group Feb 14 Featured 1:00 pm - 2:00 pm EST Sunday 2/14/27 Online Caregiver Support Group View Calendar Recent Posts 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 Strength for Today, Hope for Tomorrow: Laila’s Story A Family’s Journey with ALD – Robert & Nancy New Global Guidelines Issued for Vanishing White Matter (VWM) Read More News Share your story Read Stories
