Finding Answers, Finding Community: Tilyn’s Journey with TUBB4A Leukodystrophy
Finding Answers, Finding Community: Tilyn’s Journey with TUBB4A Leukodystrophy My name is Miesha Thomas, and…
Finding Our Village: Our Journey with Alexander Disease
Finding Our Village: Our Journey with Alexander Disease My name is Deb, and together with…
Research Summaries December 2025
ALEX TLC (Alex, The Leukodystrophy Charity) produces monthly research summaries highlighting recent leukodystrophy research and…
ULF Awards $33,000 Research Grant to Advance Gene Therapy for H-ABC
The United Leukodystrophy Foundation (ULF) is proud to announce the award of a $33,000 research…
Historic Expansion of Newborn Screening Includes MLD
Historic Expansion of Newborn Screening Includes Metachromatic Leukodystrophy (MLD) We are encouraged to share that…
Eden’s Story: Helping Families and Supporting Research Through Her Legacy
Eden’s Story: Helping Families and Supporting Research Through Her Legacy https://ulf.org/wp-content/uploads/2025/12/Eden.mp4We are the Murphy Family,…
Hope in Action: ULF Board Member’s Son Receives World’s First SLC6A1 Treatment
We are excited to share a powerful new People Magazine feature highlighting our ULF Board…
Strength for Today, Hope for Tomorrow: Laila’s Story
Strength for Today, Hope for Tomorrow: Laila’s Story https://ulf.org/wp-content/uploads/2025/12/Laila-2.mp4We are Sam and Angela, and this…
A Family’s Journey with ALD – Robert & Nancy
Robert & Nancy: A Family’s journey with ALD When a family faces a leukodystrophy diagnosis,…
New Global Guidelines Issued for Vanishing White Matter (VWM)
New Global Guidelines Issued for Vanishing White Matter (VWM) — A Significant Step Forward for…
Research Summaries October 2025
ALEX TLC (Alex, The Leukodystrophy Charity) produces monthly research summaries highlighting recent leukodystrophy research and…
New Global Patient Registry for MicrogliopathiesGlia
GliaConnect has launched a new global patient registry for individuals and families affected by microgliopathies…
New Research: Endogenous Repair in Vanishing White Matter
A newly published article, “Endogenous Repair in Vanishing White Matter” explores how the brain may…
Calyx: New Clinical Trial in cALD
Learn more at ClinicalTrials.gov!
In Memorial and Honor: May – September 2025
ULF received donations in memorial or honorarium for the following during May through September 2025….
Teagan’s Story
A Mother’s Love, A Child’s Legacy: Teagan’s Story Our daughter, Teagan Ann, will forever be…
Positive Results Announced for Alexander Disease Clinical Trial
Ionis anounces positive topline results from pivotal study of zilganersen in Alexander disease The Ionis…
Kim’s Story
Kim’s Story: A Family Bond with ALSP In 2019, my brother Jeffrey Cade was 42 when…
Moa’s Story
Moa’s Story Moa is a fantastic girl with a big, bright smile that charms every…
The Hidden Impact of Vanishing White Matter (VWM) on Families
New Research Sheds Light on the Burden for Parents, Siblings, and Partners A groundbreaking international…