2022 Leukodystrophy and Awareness Campaign
September is Leukodystrophy Awareness Month! A leukodystrophy is a type of disease that causes degeneration of the myelin, or "white matter" of the brain. Every individual requires healthy production of myelin for speed and accuracy of nerve impulses within the brain. Without a healthy myelin sheath, your nerves can’t send and receive signals properly.
Krabbe disease is one specific type of leukodystrophy. Today, there are more than 50 different types of leukodystrophies identified. Some more commonly known leukodystrophies are Metachromatic leukodystrophy (MLD), Niemann-Pick disease, Canavan disease, Vanishing White Matter, Alexander disease, and Krabbe disease.
Newborn screening is an important test performed, approximately 24-48 after a baby is born in the United States, to help identify life threatening conditions. The heel is pricked by a nurse to collect a small sample of blood. Afterwards, the nurse puts a series of blood drops onto a filter paper to create several “dried blood spots.” Next, the newborn screening card is sent to the state laboratory for analysis. Most states screen for the majority of conditions included on the Recommended Uniform Screening Panel (RUSP). You can learn what conditions your state screens for at birth here. Currently, only 10 states test for Krabbe disease.
About the Campaign
This year, we’re working as a community to expand education on the importance of newborn screening for Krabbe disease by developing state fact sheets.
We will post 8 different state fact sheets with a description of Krabbe disease, a description of newborn screening, and a family story on the impact of newborn screening or the lack of screening for Krabbe disease in a state.
The sharing of 8 state fact sheets during the month of September is just the starting point. This campaign will continue until we have a fact sheet for each of the 50 states!
Three Way to Support Our Community and Help #curekrabbe
This year. we are proud to have the following organizations sponsor our Leukodystrophy Awareness Campaign:
Leukodystrophy Awareness Partnership
In addition to KrabbeConnect’s Leukodystrophy and Newborn Screening Awareness Campaign, we have partnered with the United Leukodystrophy Foundation to help share out their daily fact sheets. We invite you to learn more about the United Leukodystrophy Foundation here.