June 1, 2025

2025 Swing for Saylor Golf Tournament

KrabbeConnect is excited to introduce a new and meaningful way to bring our community together—one that raises awareness and vital funds to support families affected by Krabbe disease. We are proud to announce the Inaugural Swing for Saylor Golf Tournament, set to take place on Sunday, June 1st, 2025, at Emerald Greens Golf Course in […] Read More

June 28, 2025

2025 Krabbe Family Warrior Meet-up at the United Leukodystrophy Family Conference

This family meet-up will feature Krabbe-specific scientific, advocacy, and family support sessions. This meeting is designed to empower patients and their families by providing information and tools to help navigate Krabbe disease. KrabbeConnect wants you to use this time to connect and learn from others walking in your shoes, hear from the medical and research community on […] 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

KrabbeConnect Wine Collection

In October 2023, KrabbeConnect connected with Jennifer Tanner at Old York Cellars Winery to talk about how their group works to give back to philanthropic causes.  After a month of discussion and planning, Old York Cellars helped develop a unique collection of wines aimed to raise funds and awareness for Krabbe disease. Shop Online Now […] Read More