Please note that events are listed for Central Time Zone (Chicago). Upcoming Events Jul 28 1:00 pm - 2:00 pm Caregivers Support Group Aug 25 12:00 pm - 1:00 pm Caregivers Support Group Sep 29 1:00 pm - 2:00 pm Caregivers Support Group Oct 27 12:00 pm - 1:00 pm Caregivers Support Group Nov 24 1:00 pm - 2:00 pm Caregivers Support Group View Calendar Recent Posts Orchard Therapeutics Outlines U.S. Launch Plans for Lenmeldy™ (atidarsagene autotemcel), the Only Approved Therapy for Children with Early-onset Metachromatic Leukodystrophy FDA Approves First Gene Therapy for Children with Metachromatic Leukodystrophy In Memorial and Honor – February 2024 Two ALSP Studies Now Recruiting In Memorial and Honor – January 2024 Forge Biologics Announces Positive FBX-101 Clinical Trial Update in Patients with Krabbe Disease Identified by Newborn Screening Ahead of RUSP Vote In Memorial and Honor – December 2023 Daniil’s Story In Memorial and Honor – November 2023 In Memorial and Honor – October 2023 Read More News Share your story Read Stories