About KrabbeConnect
Founders, Stacy Pike-Langenfeld and Anne Rugari, formed KrabbeConnect, a 501 (c)(3) in 2017, to bridge the gap between Krabbe disease science and patient knowledge.
The idea for KrabbeConnect originated from the 2015 Family Centered-Krabbe Translational Research Network meeting (FC-KTRN), a collaborative meeting between researchers and families to aid in solving the uncertainties of Krabbe disease. Through KrabbeConnect, the foundation provides a platform to amplify the voice of patients, aiding researchers and drug developers in accelerating research for better treatments for Krabbe disease.
Learn More about KrabbeConnect
KrabbeConnect’s dedication and efforts will advance research, provide family support, enhance education, and raise awareness, one step at a time. The organization will encourage patients, caregivers, medical scientists, clinicians, industry, and the government to work together quickly to assure a better life for patients. KrabbeConnect believes advances are made when we align ourselves with the same goal, improving the quality of life of those diagnosed with Krabbe disease.
We encourage you to learn more about us by understanding our Mission, Vision, and Multi-Center Approach here. If you have questions or want to connect with us, please Contact Us. We would love to hear from you!
💙 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 ... See MoreSee Less
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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/ ... See MoreSee Less
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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 ... See MoreSee Less
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. ... See MoreSee Less
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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/ ... See MoreSee Less
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Super Bowl Squares Challenge Drawing ... See MoreSee Less
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