Month: September 2025

The Hidden Impact of Vanishing White Matter (VWM) on Families

News, Research / September 4, 2025

New Research Sheds Light on the Burden for Parents, Siblings, and Partners A groundbreaking international study has revealed something our community has long known: Vanishing White Matter (VWM) doesn’t just affect patients. It deeply impacts their families too. A new study, “The impact of vanishing white matter on unaffected family members,” published in the Orphanet …

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Johana’s and Ella’s Story

Share Your Story / September 2, 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, …

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