September was #LeukodystrophyAwarenessMonth! The United Leukodystrophy Foundation (ULF) rallied leukodystrophy nonprofits to help “shine a light” on leukodystrophy. cureCADASIL participated in the ULF events including the #SayItRight video campaign. By raising awareness of leukodystrophy, we can improve early diagnosis, fund research, and provide resources to families affected by a leukodystrophy. The “L” in CADASIL stands for leukoencephalopathy, “which is a leukodystrophy-like disease, and a term that describes all of the brain white matter diseases” (

Leukodystrophy describes a group of more than 50 inherited (genetic) neurological disorders. These diseases affect the myelin, the protective covering on nerve cells in the brain and spine. (Leukodystrophy – About the Disease – Genetic and Rare Diseases Information Center ( In CADASIL the white matter in the brain is affected. Without myelin, nerves cannot communicate well. Leukodystrophies cause a progressive loss of neurological function in infants, children, and some forms of the disease do not cause symptoms until people are adults (as is the case in CADASIL). Leukodystrophies affect 1 in 7,000 live births. ULF works on the premise that collaboration between the over 50 leukodystrophy advocacy groups is key to ensuring advances for all affected by leukodystrophies.

cureCADASIL participated in ULF’s Leukodystrophy Awareness Month program. Activities included efforts to light up buildings and other landmarks with the ULF blue color. In addition, a video “Say it Right” was produced with a number of member organizations having members pronounce “Leukodystrophy”. Cure CADASIL’ logo appears in the upper left of the video’s background.

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