KrabbeConnect

Yes, we have a newsletter—and we want you to be in the know!

Stay connected with the latest research updates, family resources, community events, and opportunities to get involved.

Visit KrabbeConnect.org and scroll to the bottom of the page to subscribe today.

🧬 What is psychosine—and why does it matter in Krabbe disease?

Psychosine is a toxic substance that builds up when the body lacks enough GALC enzyme to properly break down certain fats inside the lysosome. As psychosine accumulates, it damages the cells responsible for protecting our nerves, leading to the devastating effects of Krabbe disease.

Understanding this process helps families, researchers, and clinicians work toward earlier diagnosis, better treatments, and ultimately a cure.

Knowledge is power. Together, we're bridging the gap between science and patient understanding. 💙

Happy Father's Day to the incredible dads in our Krabbe disease community. 💙

Today, we celebrate your strength, your unwavering love, and your dedication through every challenge and every triumph. Whether your child is by your side or forever in your heart, we honor you today and always.

From all of us at KrabbeConnect, Happy Father's Day.

Researchers have identified more than 300 different GALC gene variants that can cause Krabbe disease.

Ugh… in English, please! 😅

Think of your DNA like a recipe book. The GALC gene is one recipe that tells your body how to make an important enzyme. A gene variant is simply a change in that recipe.

🍰 If the recipe says "add 2 cups of flour" instead of "add 2 tablespoons of flour," your cake probably won't turn out right.

The same can happen in our genes. Some changes are so small they don't matter at all. Others can prevent the body from making enough of the GALC enzyme, leading to Krabbe disease.

And to make things even more confusing, not all GALC variants behave the same way. Some are linked to infantile-onset disease, while others may lead to later-onset forms—and researchers continue to discover new variants every year.

Understanding these genetic changes is critical to improving diagnosis, guiding treatment decisions, and advancing research toward better therapies and, ultimately, a cure. 💙

💙 To our incredible community—thank you. 💙

We are continually humbled by the number of individuals who choose to celebrate birthdays, honor loved ones, and support KrabbeConnect through Facebook fundraisers.

Your generosity reaches families affected by Krabbe disease at every stage of life—from infants and young children to teens and adults. Every donation helps us advance research, provide trusted resources, advocate for better access to care and essential medical equipment, and support families navigating one of life's most difficult journeys.

Most importantly, your kindness fuels hope. Hope for better treatments. Hope for expanded support. And hope that one day, no family will have to hear the words, “You're loved one has Krabbe disease.”

From all of us at KrabbeConnect and the families we serve, thank you for believing in our mission and standing with our community. Together, we are making a difference. 💙

For many, weekends are a chance to rest and recharge. For families living with Krabbe disease, caregiving continues 24 hours a day, 7 days a week. Mondays can feel especially overwhelming when there was little opportunity for a break.

This month, consider giving just one hour to a family affected by Krabbe disease.

💙 Mow their lawn
💙 Bring a meal
💙 Run an errand
💙 Fold laundry
💙 Watch siblings
💙 Simply show up

One hour of kindness can make a world of difference. 💙

⏰ T-16 Days Until We Gather!

The countdown is on, and we can't wait to bring the Krabbe community together for this year's Family Warrior Meet-Up!

A heartfelt thank you to our second meeting sponsor, Rosenau Family Research Foundation, for their incredible commitment to families affected by Krabbe disease. Through significant investments in research, they are helping fuel the scientific discoveries that will pave the way for better treatments and, ultimately, a cure. Their partnership continues to make a meaningful difference for our community.

To everyone who has registered—we're thrilled to share that this year's meeting is officially at capacity! We have an amazing group of families joining us, and we know it will be an impactful day of learning, connection, and hope.

📧 Registered attendees: Keep an eye on your inbox next week! We'll be sending a detailed information packet with everything you need to know before you arrive. Our team is putting the finishing touches on all the logistics to ensure a wonderful experience for every family.

See you in just 16 days—we're looking forward to making this gathering one to remember! 💙🧡

Happy Wednesday! ICYMI - don’t forget to register. 💙

💙 Adult Krabbe Disease Support Group 💙

You are not alone.

Join us for a virtual support group designed for those diagnosed with juvenile and adult Krabbe disease. This is a safe space to connect with others who understand the unique challenges of Krabbe disease, share experiences, ask questions, and find support.

Whether you're newly diagnosed or have been navigating this journey for years, we invite you to join the conversation.

📍 Virtual via Zoom
🤝 Connection • Support • Community

Must be 18+ to register. Register here - https://us02web.zoom.us/meeting/register/5nXmE850TnOOKsk6vrTrjQ

Together, we are stronger. 💙

At KrabbeConnect, everything we do is guided by three core pillars:

🧡 Amplify the voices of patients and families affected by Krabbe disease.
🔬 Help fill critical gaps in research by advancing knowledge and understanding.
📚 Provide trusted information, resources, and support throughout every stage of the journey.

Together, we're connecting patients, families, clinicians, and researchers to create a stronger future for the Krabbe community.

Because every story matters. Every question deserves an answer. Every family deserves support.

Michelle and Bre not only completed the competition in 1 hour and 23 minutes, but they also raised nearly $6,000 for KrabbeConnect! 🎉

The names written on their arms sparked conversations throughout the event, creating opportunities to share the stories of our Krabbe warriors and angels. Because of their efforts, more people learned about Krabbe disease, more awareness was raised, and new supporters stepped forward to help.

Thank you, Michelle and Bre, for turning every step, every challenge, and every conversation into hope for the Krabbe community.

Copy link to get apparel - https://krabbeconnect.org/kcevent/hybrid-for-hope/

💙