Families Met and Families Shared at the 2025 ULF Conference.

ULF Annual Family Conference 2025

The ULF Annual Family Conference was an incredible experience for families living with leukodystrophy. Attendees connected with leading medical experts, learned about the latest treatments and care options, and heard from advocacy groups sharing up-to-date resources across the leukodystrophy spectrum. Beyond the sessions, the conference offered practical tools, hope, and—most importantly—a strong sense of community.

The Foundation to Fight H-ABC proudly sponsored a mini-session and community meeting focused on H-ABC/TUBB4A, which was well attended and brought together researchers, clinicians, and families.

🎥 Watch the full symposium here:
2025 ULF Family Conference: Foundation to Fight H-ABC Symposium – H-ABC/TUBB4A

CHAPTERS:

0:00 - Introduction

1:55 - H-ABC Overview, Dr. Adeline Vanderver

9:21 - Synaptix Bio - Updates on ASO trial, Uwe Meya

59:14 - Types of Research Studies, Dr. Amy Waldman

1:38:56 - Identifying key Differences between 'N-of'1' and clinical trials, Dr. Amanda Nagy

1:59:00 - UnRavel Bio, Dr. Frederic Vigneault

2:28:00 - Child Neurology Foundation, Kim Hindery

2:51:15 - Foundation to Fight H-ABC & Gene Therapy, Michele Sloan

2:57:31 - Patient Family Testimonials