Month: December 2025

Hope in Action: ULF Board Member’s Son Receives World’s First SLC6A1 Treatment

News / December 11, 2025

We are excited to share a powerful new People Magazine feature highlighting our ULF Board Member Amber Freed and her son Maxwell, and the extraordinary journey that led to a groundbreaking milestone in rare disease history. In the article, Amber’s son Maxwell is described as having a neurodevelopmental condition known as SLC6A1, a rare genetic …

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Strength for Today, Hope for Tomorrow: Laila’s Story

News, Share Your Story / December 8, 2025

Strength for Today, Hope for Tomorrow: Laila’s Story https://ulf.org/wp-content/uploads/2025/12/Laila-2.mp4 We are Sam and Angela, and this is the story of our daughter, Laila. Our journey with leukodystrophy began when our daughter, Laila, was diagnosed with MLC1 with subcortical cysts at just 2 years old. Today, she is 14. She began walking independently, though with a …

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A Family’s Journey with ALD – Robert & Nancy

Give 2025, News, Share Your Story / November 17, 2025

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 …

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