Welcome to KrabbeConnect
KrabbeConnect is dedicated to improving care and finding a cure for Krabbe disease through collaboration across a network of patients, advocates, doctors, researchers, and organizations. Our goal is to bridge science and patient knowledge to improve care and find a cure. We are committed to a patient-centered approach, ensuring that the voices of patients and caregivers guide research and care.
Our Heroes
We are working towards a day in which each patient receives an early diagnosis, has access to state-of-the-art care, and lives a life free of Krabbe disease. Help us celebrate all of the Krabbe disease Heroes and join the fight to #curekrabbe!
Current & Upcoming Events
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
August 23, 2025
Bloom for a Cure: A Family-Friendly Event at Hershey Gardens
Join us for a heartwarming and joyful evening at the beautiful Hershey Gardens as we unite to raise awareness and vital funds for Krabbe disease research. This special event brings families, friends, and community members together in support of a meaningful cause — helping children and families affected by this rare and life-threatening condition. One […] Read More
August 23, 2025
Connor’s Kure for Krabbe
Join us for Connor’s Kure for Krabbe, a heartfelt fundraising dinner event held at the stunning Coeur d’Alene Resort overlooking the crystal waters of Lake Coeur d’Alene in Coeur d’Alene, Idaho. This special evening is dedicated to honoring the life of Connor, a brave little boy who courageously fought Krabbe disease before sadly losing his […] Read More
At KrabbeConnect, we know how overwhelming and emotional a new diagnosis of Krabbe disease can be. That’s why we created Ella’s Welcome Wish Program—a heartfelt initiative that provides newly diagnosed families with a comforting care package filled with practical items, helpful resources, and a reminder that they are not alone. 💛
If your family has recently received a Krabbe diagnosis or you know someone who has, please visit - krabbeconnect.org/programs-events/ellas-welcome-wish/
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Happy Monday, friends and advocates!
This video may be four years old, but the story it tells is still the reality for so many families navigating the heartbreak and challenges of Krabbe disease.
💔 While the journey remains incredibly difficult, we are encouraged by one important step forward: Krabbe disease has been officially added to the Recommended Uniform Screening Panel (RUSP) — a national guideline that helps states decide which conditions to include in newborn screening programs.
This is a major win for early detection and a critical milestone in the fight to save lives. But our work is far from over.
Families continue to face overwhelming obstacles, and a diagnosis still too often comes too late. Together, we must keep pushing for awareness, research, and expanded newborn screening in every state.
Let’s keep sharing, advocating, and supporting the Krabbe community. Every voice matters. 💚
#CureKrabbe #KrabbeAwareness #NewbornScreening #RUSP #KrabbeDisease
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To every dad walking the #KrabbeDisease path - past, present, and future - we hope you have a day full of love and warm embraces
#curekrabbe
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🌸 Calling all East Coast friends, supporters, researchers, and change-makers! 🌸
We’re coming together for Bloom for a Cure — a heartfelt event to raise awareness and critical funds for families impacted by Krabbe disease.
This isn’t just an event — it’s a movement of hope, action, and community. A space where families, medical experts, and advocates unite to support research, share resources, and bring comfort to those facing this devastating diagnosis.
💜 Meet Bentley – an incredible 8-year-old living with Krabbe disease. He received a stem cell transplantTypically this refers to a bone marrow transplant with the goal of replacing non-working cells with healthy working cells. Bone marrow is a rich source of stem cells that have the unique ability to at 2 years of age — a treatment that extended his life, but not a cure. Bentley continues to inspire us daily with his strength and smile, and he reminds us why we must push forward. Research is urgently needed to improve outcomes and find a real cure.
🗓️ Mark your calendars!
📍 Hershey Gardens
✨ Family-friendly activities | Inspiring stories | Beautiful blooms | Silent auction & more!
Tickets, sponsorship, and details here - krabbeconnect.org/kcevent/bloom-for-a-cure/
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Join us August 23rd in Coeur d’Alene, Idaho for a heartfelt fundraising dinner, honoring the life of Connor, a brave little boy who courageously fought Krabbe disease. We want to fill the room. Get your tickets today for $110 here - events.handbid.com/lp/connors-kure-for-krabbe
#curekrabbe #krabbeconnect
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Breaking news - #krabbeconnect is eager to learn more. Thank you, Chiesi Group
www.globenewswire.com
Collaboration will leverage Key2Brain’s technology to develop blood-brain barrier-crossing enzymeA protein needed by the body to break down certain substances by causing a biochemical reaction within the cells. In Krabbe disease, galactocerebrosidase is the deficient enzyme. Words that end in replacement therapies for lysosomal storage disorders ...0 CommentsComment on Facebook