Please note that events are listed for Central Time Zone (Chicago). Upcoming Events Mar 16 8:00 pm - 9:00 pm EDT Monday 3/16/26 Online Caregiver Support Group Mar 22 Featured 2:00 pm - 3:00 pm UTC+0 Upcoming Webinar: Activities and Fitness for the whole family Apr 12 12:00 pm - 1:00 pm CDT Sunday 4/12/26 Online Caregiver Support Group May 18 8:00 pm - 9:00 pm EDT Monday 5/18/26 Online Caregiver Support Group Jul 20 8:00 pm - 9:00 pm EDT Monday 7/20/26 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
