Share Your Story

Share your story

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

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

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

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

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

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 »

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 …

Strength for Today, Hope for Tomorrow: Laila’s Story Read More »

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 …

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

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 …

Teagan’s Story Read More »

Kim’s Story

Share Your Story / September 24, 2025

Kim’s Story: A Family Bond with ALSP In 2019, my brother Jeffrey Cade was 42 when he awoke one morning unable to speak clearly. Jeffrey immediately called our family, and we urged him to drive to the hospital. After an overnight stay, the doctors assumed Jeffrey had a minor stroke and asked him to follow up …

Kim’s Story Read More »

Moa’s Story

Share Your Story / September 24, 2025

Moa’s Story Moa is a fantastic girl with a big, bright smile that charms every soul she meets.  A girl with her heart in the right place and a twinkle in her eyes. She leaves no one untouched.  We are from Sweden and live in Malmö. Moa is nine years old and lives with her …

Moa’s Story Read More »

Johana’s and Ella’s Story

Share Your Story / September 24, 2025

Johana and ella In 2015, the teachers at our eldest’s daughter’s high school noticed she was struggling with remembering things. Johana was 16 and had always experienced learning difficulties. However, the teachers were concerned, so we took her to see a pediatric neurologist. In early January 2016, after an MRI and blood and urine tests, …

Johana’s and Ella’s Story Read More »

A Legacy of Hope: Join Bob & Yvonne in Supporting the ULF

Share Your Story / December 3, 2024

We are Bob and Yvonne Rauner. We are the parents of our two sons, Kevin and Paul, who had adrenoleukodystrophy and adrenomyeloneuropathy. Our story began with all the same challenges ALD families faced at the time. We navigated a three-year diagnostic odyssey with Kevin. He was “diagnosed” with ADHD and treated for it but yet …

A Legacy of Hope: Join Bob & Yvonne in Supporting the ULF Read More »