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
January 2026
2026 Super Bowl Square Challenge
Super Bowl squares, also known as football squares, are often a fun staple of Super Bowl parties everywhere. In 2018 we initiated this fundraiser as a fun way to drive excitement about our mission at KrabbeConnect which is, to be the source of comprehensive information and access to resources for patients with Krabbe disease. The foundation will drive state-of-the-art research by bridging the gap between science and patient knowledge. Read More
March 20, 2026
2026 Putt-Putt to #CureKrabbe
Join us for a fun evening of miniature golf while giving back to families impacted by Krabbe disease! Putt-Putt to #CureKrabbe brings together community members, professionals, and advocates for friendly competition, connection, and purpose. Why This Event Matters Funds raised through Putt-Putt to #CureKrabbe directly support individuals and families navigating Krabbe disease by: Your participation […] 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
Save the Dates, Registration Coming Next Week 💙
🔹 Part 1: The Process
Learn about IVF with PGD/PGT-M—what it involves, how it works, and key considerations for families navigating genetic risk.
🔹 Part 2: Lived Experiences
A family panel sharing real-life journeys with IVF and PGD—honest insights, challenges, and lessons learned.
Informed decisions start with shared knowledge. Join us to ask meaningful questions, learn, and gain insight from experts and lived experience.
#curekrabbe #ivf #StrongerTogether
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💙 We’re excited to share this news!
KrabbeConnect is proud to sponsor and host a panel at the upcoming Krabbe Translational Research Network (KTRN), hosted by Rosenau Family Research Foundation
The KTRN meeting will bring together voices across the community—families, researchers, clinicians, and advocates—to learn, connect, and network around what it truly takes to move Krabbe disease research forward.
Progress doesn’t happen in silos. It takes collaboration, honest and robust discussion, and action. We are confident that when we work together, a cure is not just possible—it’s achievable.
We hope you’ll join us as we continue building momentum toward better outcomes and, ultimately, a cure. 💪🧬
#KrabbeDisease #KTRN #RareDiseaseResearch #CollaborationMatters #CureKrabbe #StrongerTogetherRegistration for KTRN 2026 is live!
At this year's KTRN meeting, we will be taking the next step in determining the focus of our community through the remainder of the decade. Last year's panel discussions helped us identify the current gaps and needs in Krabbe disease. In 2026, along with an exciting set of presentations from our network of researchers, we will be creating a roadmap for Krabbe disease-related science and innovation through a series of round table workshops to review, discuss, and address those key challenges.
Register now at rosenaufoundation.org/ktrn
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🏈 Patriots vs. Seahawks. Big Game. Bigger Impact.
The Super Bowl is almost here — and so is your chance to help us #winwithkrabbe through our Super Bowl Squares Challenge!
✨ Only ~40 squares left before we sell out
💙 Proceeds support families impacted by Krabbe disease and critical research
🎉 A fun, easy way to cheer on the game and make a difference
Grab your square before kickoff and help us score one for the Krabbe community:
👉 krabbeconnect.org/kcevent/annual-super-bowl-square-football-challenge/
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💙 KrabbeConnect is here for you. 💙
Living with Krabbe disease comes with incredibly tough challenges — from medical bills and equipment needs to travel for care and everyday supplies. You give so much of your time and energy to caring for your loved one, and we want to help ease some of that burden.
What’s available:
• Assistance with medical supplies not covered by insurance
• Access to donated equipment through the Equipment Exchange Program
• Holiday grants and financial support during challenging times
• Help with rent/mortgage, travel, and more based on need
You are not alone in this journey — we’re in it together. Visit the Patient Assistance Program page to learn more and apply today: krabbeconnect.org/community-engagement/krabbeconnect-patient-assistance-program/
#KrabbeConnect #KrabbeDisease #SupportFamilies #PatientAssistance #YouAreNotAlone
KrabbeConnect Patient Assistance Program - KrabbeConnect
krabbeconnect.org
Patients and families living with and/or caring for someone with Krabbe disease face enormous challenges. Out-of-pocket medical expenses, large deductibles, unpaid time away from work, supportive ther...0 CommentsComment on Facebook
We’ve added a new webinar series to our calendar — stay tuned, final dates coming soon!
This two-part series, “IVF with PGD/PGT-M: Understanding Options & Real-Life Experiences,” is an important conversation for families navigating Krabbe disease and thinking about growing their family.
These decisions are deeply personal, complex, and often overwhelming—medically, emotionally, and financially. Our goal is to create a space that offers both trusted education and real family perspectives, so families don’t have to navigate these questions alone.
This series will bring together information, lived experience, and community connection to support families who are exploring their options and seeking clarity, understanding, and hope.
💙 Stay tuned for registration details and final dates — we look forward to learning, listening, and walking this journey together.
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Did you catch the live Facebook update from our President, Stacy Pike-Langenfeld, on Friday? She shared some exciting news—if all Super Bowl Squares sell out, every square purchased will be entered to win a $100 Nike gift card! 👟🎉
We’re so close, but 76 squares are still open and we need your help to cross the finish line. Tell a friend, coworker, family member—even a neighbor—to grab a square.
Every square sold helps KrabbeConnect support families navigating a devastating diagnosis and fuels research working toward better treatments and, ultimately, a cure. A small action can make a meaningful impact. Let’s fill the board together. 💙
Purchase here: krabbeconnect.org/kcevent/annual-super-bowl-square-football-challenge/
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