September 2023
September is LeukodystrophyThe leukodystrophies comprise a group of progressive, genetic disorders mainly affecting the central nervous system (CNS). Most leukodystophies result from a disruption of the growth of the myelin sh Awareness Month! A leukodystrophy is a type of disease that causes degeneration of the myelinMyelin is an essential material your body uses to surround and protect nerve fibers. – 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 disease, 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. Then, 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 a majority of the conditions included on the federal Recommended Uniform Screening Panel (RUSP). You can learn what conditions your state screens for at birth here. Currently, only 11 states test for Krabbe disease.
Ways to Support Our Community and Help #curekrabbe
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This year, we’re continuing efforts to expand education on the importance of Newborn Screening for Krabbe disease by releasing additional BE THE STORY state fact sheets. Currently, we have 8 states represented. You can find those here. We will post several NEW state fact sheets showcasing a family’s story on the impact of Krabbe disease Newborn Screening.
Please share the Newborn Screening fact sheets on your social media platforms and use the hashtag – #nbs4krabbedisease2023
Give
This year, we want YOU to understand the impact of your level of giving. Every dollar donated to KrabbeConnect is stretched to achieve the maximum value from every donor’s gift. We invite you to take a moment to review the flyer below on how your gift can make a difference for someone navigating Krabbe disease today.
Give in honor of someone you know who has battled or is currently battling Krabbe disease. This disease is relentless and any gift you’re comfortable giving is appreciated and remembered. If you’re unable to give at this time, please share our flyer and encourage others to give in honor of Leukodystrophy and Newborn Screening Awareness Month. We encourage you to use the hashtag- #lam2023
