Give 2025

Finding Answers, Finding Community: Tilyn’s Journey with TUBB4A Leukodystrophy My name is Miesha Thomas, and I’m the mom of Tilyn Sincere, my 6-year-old son living with TUBB4A Leukodystrophy (H-ABC). Our journey started with years of questions and a misdiagnosis of cerebral palsy. I knew something wasn’t right, he fell often, army-crawled sideways, and missed milestones …

Finding Answers, Finding Community: Tilyn’s Journey with TUBB4A Leukodystrophy   Read More »

Finding Our Village: Our Journey with Alexander Disease My name is Deb, and together with my husband, Jim, we are the proud parents of Daniel. From the very beginning, I sensed something was not right during my pregnancy. Despite being reassured repeatedly that everything was fine, I trusted my instincts and sought out a neonatologist. …

Finding Our Village: Our Journey with Alexander Disease Read More »

Eden’s Story: Helping Families and Supporting Research Through Her Legacy https://ulf.org/wp-content/uploads/2025/12/Eden.mp4 We are the Murphy Family, and our daughter, Eden Alexandra, was born on January 10, 2025. She was not breathing at birth, and that was the start of her short but complicated journey. She was in the NICU for thirty-three days and fought through …

Eden’s Story: Helping Families and Supporting Research Through Her Legacy Read More »

Robert & Nancy: A Family’s journey with ALD When a family faces a leukodystrophy diagnosis, the journey can feel overwhelming and isolating. That’s where the United Leukodystrophy Foundation (ULF) comes in. Since 1982, ULF has provided families with life-changing information and resources, access to expert care, and a compassionate, connected community that ensures no one …

A Family’s Journey with ALD – Robert & Nancy Read More »