May 1, 2026

HYBRID for Hope: Michelle Salvo’s Campaign to #curekrabbe

This is more than a race. This is a mission. Michelle and her training partner, Bre, are taking on a HYROX race as part of Hybrid for Hope—turning strength, endurance, and discipline into support for families impacted by Krabbe disease. This cause is deeply personal. Michelle has seen firsthand the strength it takes for families […] Read More

June 27, 2026

2026 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 […] Read More

Sunday, August 23, 2026

2026 BrAvery for Avery Golf Tournament

Come swing a club and make a difference at the 6th Annual BrAvery for Avery Golf Tournament at Valley Country Club in Warwick, RI — a day of golf, community, and hope as we honor Avery’s legacy and help #curekrabbe. This special event honors the life and legacy of Avery Coupe while raising funds to […] 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