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
September 2025
2025 Leukodystrophy & Newborn Screening Awareness Month
September is LeukodystrophyThe leukodystrophies comprise a group of progressive, genetic disorders mainly affecting the central nervous system (CNS). Most leukodystophies result from a disruption of the growth of the myelin sh and Newborn Screening Awareness Month! The goal is to encourage parents, healthcare providers, and policymakers to advocate for the inclusion of more conditions, like leukodystrophy, in routine newborn screening panels. Read More
October 17-26, 2025
2025 Anywhere Strides 5k Walk/Run to #curekrabbe!
Join us for a meaningful journey towards a cure! Anywhere Strides invites you to lace up your sneakers and join our 5k walk or run, all in support to #curekrabbe. By participating in Anywhere Strides 5k, you’re not just taking steps or running miles – you’re making strides towards a cure for Krabbe disease. Your […] Read More
Ongoing
See’s Candies to Help #curekrabbe
Sweeten hearts and change lives! Join Krabbeconnect’s Year-Round Candy Drive. Your support will help satisfy sweet cravings and fuel research for those affected by Krabbe disease. This is a great way to send a gift to others while making a difference with your purchase! Participation is simple. Here’s how it works: You can ship […] Read More
Have you or someone you love been affected by Krabbe disease? 💚
You can make a difference today by joining our virtual walk/run — it's just $25 to participate, and yes, there are prizes! 🎉👟
Every step helps fund life-changing research and our patient assistance program.
🏁 Right now, the top fundraising teams are:
🥇 #TeamTygh – $965.86
🥈 #TeamMakayla – $325.86
🥉 #TeamSaylor – $248
Let’s keep the momentum going!
Our goal: 200 participants and $20,000 raised.
➡️ Sign up, donate, or share: krabbeconnect.org/kcevent/anywhere-strides-5k-walk-run-to-curekrabbe/
#KrabbeAwareness #VirtualWalkRun #curekrabbe #KrabbeWarriors
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It’s the final day of Leukodystrophy and Newborn Screening Awareness Month, and we’re so grateful for students like Rachel Wurth who dedicate their PhD research to Krabbe disease.
Rachel is studying changes in small molecules through metabolomics—work that could uncover new biomarkers to monitor disease over time, potentially offering better insights than psychosineDue to the enzyme deficiency in Krabbe disease, psychosine accumulates in the nervous system of affected individuals. Psychosine, a galactolipid, is a cytotoxic type of lipid, that has destructive pr alone. Take a listen!
#krabbeconnect #curekrabbe #LeukodystrophyAwarenessMonth #NewbornScreeningAwarenessMonth
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We’re grateful that transplant can slow the progression of Krabbe disease. But it’s not a cure—and transplant can come with tough, long-term side effects. That’s why we must continue funding research and building strong patient programs so one day, we can #curekrabbe
#NewbornScreeningAwarenessMonth #LeukodystrophyAwarenessMonth #krabbeconnect
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HSCTHematopoietic stem cell transplantation (HSCT), a type of transplantation using multipotent hematopoietic stem cells typically derived from bone marrow, peripheral blood, or that from umbilical cord b can help protect the myelinMyelin is an essential material your body uses to surround and protect nerve fibers. sheath and slow disease progression. Screening for #krabbedisase at birth allows families to know prior to symptoms. But why isn’t HSCT a cure? Stay tuned—we’ll cover that in our next “Know the Facts” update.
#curekrabbe #newbornscreeningmonth #leukodystrophyawarenessmonth
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Deepa Rajan, MD, clinical director at UPMC Children’s Hospital and Associate Professor of Neurology at Pitt, is a leading expert in Krabbe disease. Her work focuses on clinical and supportive care as well as, developing outcome measures to advance clinical trials.
We love her message on breakthroughs and hope for the future—take a listen!
#curekrabbe #NewbornScreeningAwarenessMonth #krabbeconnect #leukodystrophyawareness
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Newborn screening can spot Krabbe disease before damage begins, giving babies a chance at early treatment like HSCT (bone marrow transplantA medical procedure whereby diseased bone marrow is replaced with healthy bone marrow. Often times, the patients’ bone marrow will be destroyed by high doses of certain chemotherapies and/or radiati) to slow progression and improve life. However, KrabbeConnect and families impacted are pushing for better options—stay tuned for the why!
#curekrabbe #NewbornScreeningAwarenessMonth #leukodystrophyawareness #krabbeconnect
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