Ongoing Awareness Campaign
"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*
Orders should be placed directly through Rokkit Crafts either through their website or through the Rokkit Crafts Etsy page.
*$5 of every butterfly sold will be donated directly to KrabbeConnect.
Ongoing Awareness Campaign
Krabbe Cookie Challenge
The Krabbe Cookie Challenge is an activity involving a round cookie, like an Oreo, and placing it on your forehead. Then, with your facial muscles (meaning no use of hands) you attempt to move the cookie into your mouth. This silly and fun challenge is being used to promote awareness of Globoid Cell Leukodystrophy, better known as Krabbe disease. This awareness campaign went viral on Tuesday, December 3rd, 2019.
The challenge encourages nominated participants to be filmed having a cookie on their forehead and using their facial muscles to move it into their mouth then nominating others to do the same. The Krabbe Cookie Challenge requires nominated participants to complete their social media post within 48 hours or they can choose to forfeit by way of a charitable financial donation to KrabbeConnect.
The Board of Directors hopes this challenge allows the opportunity for individuals across the world to learn and understand that Krabbe disease is a debilitating condition that drastically shortens the lives of those living with it. So, let’s keep the momentum going. Gather some family or friends, grab a box of cookies, film the challenge and upload to social media (giggling and belly laughs encouraged) then, nominate others to participate. Together we can #curekrabbe
Ongoing Awareness Campaign
Leukodystrophy and Krabbe Disease Awareness
Neurogene is the proud to sponsor KrabbeConnect’s Leukodystrophy Awareness Campaign to help support families directly impacted by Krabbe disease. “Just Like Me, Too!”, Anne Rugari’s newest publication will be sent FREE of charge to all families who have had a patient diagnosed with Krabbe disease. The book was inspired by Gina Rugari, who was born with Krabbe and received a transplant as a newborn. The book is beautifully illustrated by Gina Rugari which showcases her life through her artwork.