KrabbeConnect

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To reach 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.

10/07/2026

Last month, we hosted a webinar about KrabbeCURES to help our community better understand why participation matters—and how your information can make a difference.

Why join KrabbeCURES?

1. Your Experience Matters - Every Krabbe journey adds another piece to the puzzle and helps us build a clearer picture of the disease.

2. More Families = Better Data
The more people who participate, the stronger and more meaningful our data becomes. And when you participate, you can see real-time community data too—for example, how many people impacted by Krabbe are from Indiana or how others in the community answered certain questions.

3. Your Data Can Move Research Forward - Together, our information can help researchers identify patterns, understand gaps in care, ask better research questions, and work toward improved treatments—and ultimately, a cure.

One family’s experience is powerful. Hundreds of experiences together can change what we know about Krabbe disease.

👉 Join KrabbeCURES. Add your experience. Strengthen the data. Help move research forward here - https://youtu.be/eA-RaIgxVeA?si=-Nn5ZlyAENlX1H65.

10/05/2026

🛍️ SHOP. EAT. RALLY. FOR A REASON. 💙

We’re bringing our community together for a day of shopping, food, connection and purpose — all while helping families impacted by Krabbe disease.

Come shop local craft vendors, grab something delicious from our food trucks, and learn more about why finding better treatments and ultimately a cure for Krabbe disease matters so much.

Admission is FREE for attendees!

And we’re looking for vendors to join us!
🛍️ Craft Vendors: $40
🚚 Food Truck Vendors: $120

Every vendor, every shopper, every meal purchased and every person who shows up helps us create awareness and rally around children and families facing this devastating disease.

Come for the shopping. Come for the food. Stay for the mission. Together, we can help give families hope for a future without Krabbe disease.

10/02/2026

Help us welcome our newest board member - Lee Neumann - she holds a bachelor’s degree in Biology from Gustavus Adolphus College and a Juris Doctor from Hamline University School of Law. After several years practicing patent litigation at a large law firm in Minneapolis, Lee moved to a manufacturer and service provider for medical and surgical equipment. There, she is General Counsel and Corporate Secretary. Lee lives in Minnesota with her husband Eric and their two sons. We are so excited to have her part of the team!

09/30/2026

Today marks the final day of Leukodystrophy & Newborn Screening Awareness Month. 🧡💙

Throughout September, we’ve shared information about Krabbe disease, the importance of newborn screening and early detection, and—most importantly—the voices and experiences of families who live with the realities of this disease every day.

We’ve talked about the challenges. We’ve celebrated progress. We’ve shared hope. And we’ve reminded people why early identification, research, resources, and connection matter.

To everyone who read a post, shared a story, participated in an event, donated, advocated, or simply took a moment to learn about Krabbe disease—thank you for joining us. Every share helps someone new understand this disease, and awareness creates connection.

September may be ending, but our work does not. Until there’s a cure, we won’t stop.

Thank you for standing with our Krabbe families—not just this month, but all year long. 🧡💙

Together, we continue the work to .

09/29/2026

In honor of Leukodystrophy & Newborn Screening Awareness Month 🧡💙

This is what early identification can look like.

Meet twins Brendan and Trevor. They were diagnosed with Krabbe disease through Pennsylvania’s newborn screening program—before the disease had the opportunity to cause the devastating progression so many families have experienced.

Their early diagnosis gave their family something incredibly important: time and options. They were able to quickly connect with Krabbe specialists, undergo stem cell transplantation, and later participate in the investigational FBX-101 gene therapy clinical trial. The boys were among the first children treated in the trial’s low-dose cohort. Early clinical reports from that cohort described increased GALC activity, reduced psychosine, and encouraging motor and brain-development findings.

Today, their parents describe them as doing very well physically—and their story is a powerful reminder of why we fight for newborn screening.

Early identification creates time.
Time creates options.
And options create hope.

This is why newborn screening matters. 🧡💙

09/28/2026

Fact card 8: As we enter the last week of Leukodystrophy & Newborn Screening Awareness Month, we’re reminded that for Krabbe disease, timing matters.

Newborn screening offers families the opportunity to identify Krabbe disease before symptoms appear and before irreversible neurological damage has occurred. An early diagnosis can mean access to treatment options that may no longer be available once the disease has progressed.

Newborn screening doesn’t just provide an answer—it provides time.
Time to confirm a diagnosis.
Time to connect with Krabbe experts.
Time to understand treatment options.
And most importantly, time to act.

For families facing Krabbe disease, those days can make a life-changing difference.

🧡 Early detection creates options. Options create hope.

09/24/2026

Meet Slade💙

Like many babies with infantile Krabbe disease, Slade appeared healthy at birth and began reaching milestones. Around four months old, his parents, Jacob and Ashley, began noticing changes—irritability, loss of neck control, and no longer reaching for toys.

But Krabbe disease is more than symptoms, appointments, and medical care. It changes what a family imagined their child’s future would look like.

Ashley shares something she wishes more people understood:

“The anticipatory grief as you look at your baby and know you'll never get to watch him crawl, cheer on his first steps, or hear his little voice call for you.”

Those words are difficult to read—but they are important to hear.

This month, we honor Slade and every child and adult living with a leukodystrophy. We honor the parents, siblings, and families walking beside them. And we keep pushing for earlier diagnosis, better treatments, more research, and ultimately, a cure.

💙 My name is Slade. I am so strong.

09/23/2026

Fact Card #7: We wish the answer to this question was YES. 🧡

The reality is much harder.

For Krabbe disease, there is currently no cure. Hematopoietic stem cell transplantation (HSCT) can be life-saving and may slow disease progression—especially when treatment happens before significant symptoms develop—but it does not erase the damage Krabbe has already caused. It does not guarantee a life without complications, disability, or continued disease burden.

For families, this distinction matters.

A successful transplant can offer something incredibly valuable: time, opportunity and hope. But families may still face years of therapies, medical appointments, developmental or neurological challenges, and uncertainty about what the future holds.

And for individuals who are diagnosed after significant disease progression, treatment options can become even more limited.

That is why we continue to fight for earlier diagnosis, newborn screening, better treatments, continued research—and ultimately, a cure.

During Leukodystrophy Awareness Month, we want people to understand both sides of this story: there is reason for hope, but there is still so much work left to do.

Treatment changes lives. But our goal remains a cure. 🧡

09/22/2026

Join us this Saturday for Tygh’s Strides to —our final in-person opportunity to come together during Leukodystrophy Awareness Month!

🏃‍♀️ Walk or run the 5K for just $35
🙌 Not doing the 5K? Come out for FREE!
🎟️ Grab some raffle tickets and take your chance at winning some AMAZING prizes!

You don’t have to run. You don’t have to walk. You just have to show up.

Krabbe disease is rare, and rare diseases are easy to overlook. Every person who comes out helps us raise awareness, support families, and remind the world that those impacted by Krabbe disease matter.

Bring your family. Bring your friends. Come cheer on Tygh and our Krabbe community. 🧡

📍 Shepherdsville City Park
📅 Saturday, September 26
➡️ $35 to participate in the 5K | FREE to attend

Let’s finish Leukodystrophy Awareness Month STRONG. 💪

https://krabbeconnect.org/kcevent/tyghs-strides-to-curekrabbe-5k/

09/21/2026

In honor of Leukodystrophy & Newborn Screening Awareness Month, families impacted by Krabbe disease have an opportunity to learn how you can personally help move Krabbe research forward. 🧡
Join us today at 1 PM ET / 12 PM CT to learn more about KrabbeCURES—why your experiences matter, how your participation contributes to research, and how together we can help build a better understanding of Krabbe disease.

Your experience is more than your story—it can become part of the research.

Address

Rosemount, MN

Telephone

+18008005509

Website

https://krabbeconnect.org/

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