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. …
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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 …
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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 …
