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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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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 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 …
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 …
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 …
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, …
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 …
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I’m Jen Martin-Cutler, proud mom to Clark, my handsome ginger son diagnosed with Pelizaeus-Merzbacher Disease (PMD) in December 2015 at 11 months old. Clark’s leukodystrophy journey began with challenges like delayed milestones, difficulty swallowing, and nystagmus, leading us to specialists at Lurie Children’s Hospital. His care team included experts in genetics, pulmonology, neurology, ENT, and a …
My name is Margaret Halter. My husband, John, was diagnosed with Adrenoleukodystrophy (ALD)/Adrenomyeloneuropathy (AMN) in 1989 at the age of 31. We’ve been married for 41 years, live on a beautiful farm in Ohio, and have two children, a daughter and a son, both with families of their own. Our daughter is a carrier with no …
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My name is Mousumi Bose, and I am the mother of Ilan Betzer. Ilan was born in August 2010 and was soon diagnosed with Zellweger spectrum disorder, a rare peroxisomal disorder that is categorized as a leukodystrophy. As his disease progressed, our journey with Ilan was marked by complex challenges. Ilan passed away just after his first …
A Special Year-End Message from Dr. Mousumi Bose Read More »
