In September 2015, during Leukodystrophy Awareness Month, Judson’s Legacy initiated a #WhiteMatterMatters campaign to help raise awareness of leukodystrophy diseases, a group of diseases that affect the white matter of the brain. The campaign took root and #WhiteMatterMatters has become part of the collective voice for the leukodystrophy community!
Why Does White Matter Matter?
What are Leukodsytrophy Diseases?
- Leukodystrophy diseases affect the white matter of the brain. Hence, #WhiteMatterMatters!
- There are over 40 known leukodystrophy diseases. However, many still remain unclassified.
- Leukodystrophy diseases impact approximately 1 in 7000 people worldwide.
- Leukodystrophy diseases progressively affect movement, speech, vision, critical life functions, and more.
- Leukodystrophy diseases destroy the myelin sheath which covers and insulates the nerves. This distorts brain messages and inhibits the transmission of nerve impulses.
- Leukodystrophy diseases are genetic and most commonly affect children. Most of the children appear healthy at birth and even for many years.
- The word Leukodystrophy comes from Leuko, which means white, and dystrophy, meaning imperfect growth.
- There is currently no cure for leukodystrophy diseases, however, significant strides are being made to improve various treatments, available therapies, and general disease management.
Help Us Engage Social Media
- Use the #WhiteMatterMatters hashtag and let people know about leukodystorphy diseases!
- Follow and share the stories of various children with leukodystrophy diseases (click here to meet some Krabbe heroes).
- Share this video: