Current & Ongoing Events
September 2024
Leukodystrophy & Newborn Screening Awareness Month
September is Leukodystrophy and Newborn Screening Awareness Month! The goal is to encourage parents, healthcare providers, and policymakers to advocate for the inclusion of more conditions, like leukodystrophy, in routine newborn screening panels. Read More
Saturday, September 7, 2024
Ten Candles, Endless Hope: Tori’s Birthday Benefit to #curekrabbe
This event is new and it’s replacing our “A Million Dreams Gala.” Why? It’s important to KrabbeConnect to move things around the country giving other families the opportunity to witness the generosity of the community and to attend these special events. Welcome to the Ten Candles, Endless Hope event page, dedicated to Tori’s Birthday Benefit in support of the […] Read More
October 5-12, 2024
Anywhere Strides 5k Walk/Run to #curekrabbe!
Join us for a meaningful journey towards a cure! Anywhere Strides invites you to lace up your sneakers and join our 5k walk or run, all in support to #curekrabbe. By participating in Anywhere Strides 5k, you’re not just taking steps or running miles – you’re making strides towards a cure for Krabbe disease. Your […] Read More
ONGOING
Be the Story — Krabbe Disease Newborn Screening Campaign
Are you interested in being the face of our Krabbe disease newborn screening state fact sheets? We’re on a mission to help bring more education and awareness to Krabbe disease newborn screening. All 50 states must be testing for this condition now to prevent a delayed diagnosis, especially in the most severe forms. You can be the story to help change Krabbe disease. See which states across the USA do not have a Krabbe disease fact sheet. If your state is not listed, we invite you to share your story. Read More
Ongoing