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

Saturday, September 26, 2026

Tygh’s Strides to #curekrabbe 5K

Lace up, show up, and help us take meaningful strides toward a cure for Krabbe disease! Join us for Tygh’s Strides to #curekrabbe, a family-friendly 5K event bringing our community together to raise awareness, inspire hope, and support families impacted by Krabbe disease. Event Activities Enjoy a fun-filled morning for all ages featuring: Become a […] 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