Year: 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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New Global Guidelines Issued for Vanishing White Matter (VWM)

News / November 19, 2025

New Global Guidelines Issued for Vanishing White Matter (VWM) — A Significant Step Forward for Families and Care Teams We’re pleased to share a major advancement in the care of VWM. A new international consensus document has just been published, offering evidence- and expert-based recommendations for the diagnosis and clinical management of VWM. This is …

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Research Summaries October 2025

Research / November 17, 2025

ALEX TLC (Alex, The Leukodystrophy Charity) produces monthly research summaries highlighting recent leukodystrophy research and clinical trials, with a focus on key findings and advancements in treatment. These summaries are prepared by volunteer Biomedical Science students, who provide their interpretations of the latest studies and findings — helping make complex research more accessible to the …

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New Global Patient Registry for MicrogliopathiesGlia

News / November 10, 2025

GliaConnect has launched a new global patient registry for individuals and families affected by microgliopathies such as ALSP, BANDDOS, and Nasu-Hakola Disease. In partnership with Sanford CoRDS, this registry helps bring together patients, families, and researchers to advance understanding and treatment of these rare disorders. The data collected will help identify symptoms, improve care management, …

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New Research: Endogenous Repair in Vanishing White Matter

Research / November 4, 2025

A newly published article, “Endogenous Repair in Vanishing White Matter” explores how the brain may attempt to repair the white-matter damage characteristic of Vanishing White Matter (VWM) disease. This groundbreaking study was made possible through brain donations from VWM patients and their families. Their extraordinary generosity enables scientists to deepen their understanding of VWM and …

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In Memorial and Honor: May – September 2025

In Memory or In Honor Donation / October 7, 2025

ULF received donations in memorial or honorarium for the following during May through September 2025. We apologize for any inadvertent omittance or misspellings. Please notify us if we have made a mistake at office@ulf.org Honoring Loved Ones Through Generosity We are deeply grateful for the generous donations made in honor and in memory of cherished …

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Teagan’s Story

Share Your Story / September 24, 2025

A Mother’s Love, A Child’s Legacy: Teagan’s Story  Our daughter, Teagan Ann, will forever be the strongest person I have ever known. She was born on November 13th, 2016. A perfectly healthy, beautiful baby girl. Ten fingers and ten toes. Our little miracle.  Time went by so quickly, and Teagan was growing into the most …

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