Leukodystrophy Awareness Month
Krabbe disease is one of over 50 identified Leukodystrophies. Leukodytrophies are a group of diseases that causes degeneration of the myelin, or "white matter" of the brain. The word leukodystrophy comes from the Greek roots-leuko meaning white, dys, standing for lack of, and trophy, meaning growth. Every individual requires healthy production of myelin for speed and accuracy of nerve impulses within the brain.
The award winning 1992 American drama film, Lorenzo's Oil, brought awareness to one of the Leukodystrophies known as Adrenoleukodystrophy or ALD. Though ALD is the leukodystrophy most are familiar with, Krabbe disease is another relatively common form of leukodystrophy.
Please consider assisting KrabbeConnect’s mission: “to be the source of comprehensive information and access to resources for patients with Krabbe disease. The foundation will drive state of the art research by bridging the gap between science and patient knowledge.”
Here’s how you can help today:
- Purchase “Kacie” the butterfly – made to support our work at KrabbeConnect
- Donate in honor or memory of a loved one affected by Krabbe disease
- Recognize your loved one affected by Krabbe disease by adding him/her to our “Hero’s” page.
- Spread awareness about Krabbe disease by sharing this page to your followers on social media.
"Kacie" the Butterfly
It’s Leukodystoprhy Awareness Month! At KrabbeConnect, we think this is a perfect month to launch “Kacie” the butterfly. Kacie is beautiful yet delicate – just like each patient diagnosed with Krabbe disease. Kacie is bright and colorful reminding us of the beauty of life and hope. Just as a butterfly and a flower were made to support each other for survival; Kacie was made to support our work at KrabbeConnect.
Please show your support by purchasing “Kacie” for your office, home, or in honor/memory of a special loved one affected by Krabbe disease. Throughout the month of September, we will take this opportunity to teach you about Krabbe disease, KrabbeConnect, and offer friendly reminders on how to purchase your butterfly keepsake.
Butterfly Plushie Supporting Krabbe disease
Cost: $25.00 + shipping*
*$5 of every butterfly sold will be donated directly to KrabbeConnect.