Share your story
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 …
A Legacy of Hope: Join Bob & Yvonne in Supporting the ULF Read More »
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 …
Living with ALD: A Journey of Strength and Community Read More »
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 »
I’m the aunt of my beautiful niece, Isabella, who was diagnosed with Vanishing White Matter (VWM) Disease at age four in 2009. Isabella’s joyful spirit and incredible courage inspire me to be the best I can be. She faces the challenges of this devastating condition with a smile that never fades, and she brings happiness …
Help Us Bring Hope to Families Like Isabella’s This Holiday Season Read More »
“I was so fortunate to have been able to attend the ULF conference without worrying about finances, and other families should not have to be concerned about costs to be there.” Beverly Jones Devoted mother & longtime ULF supporter Beverly Jones, a devoted mother, first connected with the United Leukodystrophy Foundation (ULF) after her young …
Daniil Zamorin wrote this story, but is a native Russian speaker. The ULF has helped Daniil edit his story to be more easily understood by an English-speaking audience. He welcomes people to reach out to him, and the ULF would be happy to facilitate the connection. Please email office@ulf.org to be connected to Daniil. Hello, …
By Ruth Tindugan, ablethroughlife@gmail.com What sounded like the screams of a duckling pulled me out of the deep pond of sleep. At one o’clock in the morning, Arne was yelling again. I nudged my husband, but he did not budge. Most of the time, I would stagger into his bedroom and check on him. My …
By Heidi Edwards I’m Heidi Edwards, President and founder of Sisters Hope Foundation, a non-profit organization supporting families struggling with Hereditary Diffuse leukodystrophy with spheroids or HDLS. HDLS is now known as Adult-onset leukoencephalopathy with axonal spheroids and pigmented glia, or ALSP. I am also a caregiver for my twin sister Holly who has the …
