KrabbeConnect

01/16/2026

Super Bowl Squares Challenge Drawing

01/16/2026

🎉 EEEK — WE’RE SO EXCITED!!! 🎉

After 2 years in the making, the full article is now published: Caregiver-reported disease burden in Krabbe disease: evaluating outcomes of hematopoietic stem cell transplantation 🧬

🔗 Read the full article: https://link.springer.com/article/10.1186/s13023-025-04176-3

A HUGE shout-out to the families who shared their experiences to help shape a better future for those impacted by .

We are deeply grateful to Rosenau Family Research Foundation for funding this work, Engage Health Inc. for conducting caregiver interviews and collecting the data, and United Leukodystrophy Foundation and Partners for Krabbe Research for helping raise awareness and amplify this important study. 💜

This publication is packed with important data families, clinicians, and states can use to better understand real-world outcomes of HSCT and inform newborn screening and treatment decisions.

✨ 3 Key Highlights:
• Early HSCT is associated with reduced disease burden and better overall quality-of-life scores compared to late or no transplant.
• Caregivers of early-transplanted infants reported improvements in sleep, mental health, and family/social relationships.
• The study provides critical evidence for states evaluating Krabbe disease newborn screening programs and understanding HSCT’s impact on families.

📌 Most importantly, this work will help families newly navigating a Krabbe diagnosis make more informed decisions about hematopoietic stem cell transplantation with data grounded in caregiver experience and patient-centered outcomes.

Let’s share this far and wide — real insights that matter to our community! 💜✨

01/15/2026

🏈 Tomorrow’s Notes = A BIG Day! ⭐

Set your reminder and join us LIVE at 4:00 PM EST on Facebook as we draw early bird winners for our Annual Super Bowl Squares Challenge!

✔️ Start your day strong
✔️ Invite a friend to like & follow KrabbeConnect
✔️ Tune in for the excitement and early winner drawings

👉 Good news: Super Bowl Challenge Squares are still available—but only until they’re sold out!
Grab yours here:
https://krabbeconnect.org/kcevent/annual-super-bowl-square-football-challenge/

Every square supports families impacted by Krabbe disease while adding a little fun to Super Bowl season. 💙🏈

01/14/2026

Life After Transplant: Ongoing Care, Stress, and Support

Register here: https://us02web.zoom.us/meeting/register/EHgkjd0qRNWRjqIxnpc-XQ

Space is limited to ensure families have the opportunity to talk and engage in a meaningful way.

We’re honored to welcome Sloane Kirbo as our guest speaker to help open this important conversation. Sloane’s son, Cloud, lives with late-onset Krabbe disease and is 6 years post-transplant.
For the first 10–15 minutes, Sloane will help set the stage by sharing:
• The biggest adjustments their family faced when returning home after a long hospital stay
• What’s worked for Cloud in therapies and ongoing medical care to keep him healthy
• How caring for a medically fragile child has impacted their family socially and emotionally—and how they manage those challenges

This session is designed to create space for honest reflection, shared learning, and connection among families navigating life after transplant. You are not alone—we hope you’ll join us. 💛

01/12/2026

Cabin fever? We’ve got the cure. 🏌️‍♀️
Putt-putt, prizes, food, and fun — all while giving back.

Save the date for an indoor mini golf night for the whole family! More information coming soon!

01/09/2026

💙🧡💙🧡

CNBC Cures aims to raise awareness of rare diseases. Led by "Squawk Box" anchor Becky Quick, CNBC Cures was inspired by her family's own rare disease journey.

01/09/2026

Whether you’re watching for the game, the commercials, or the halftime show—join KrabbeConnect’s Annual Super Bowl Squares Challenge and turn game day fun into meaningful impact.

Every square supports families navigating Krabbe disease and helps advance research toward better treatments and a cure. Click on the Super Bowl Banner Photo at KrabbeConnect.org to particpate.

01/07/2026

💙 Krabbe Support Groups | 2026 💙

We’re honored to launch our first 2026 Krabbe Support Group session on February 10th.

🗓 First Topic:
Life After Transplant: Ongoing Care, Stress, and Support

This session is designed for families whose loved one with Krabbe disease has undergone stem cell transplantation within the past 4 years and are navigating the long road that follows. Post-transplant care brings ongoing medical needs, emotional strain, and tremendous stress—and you don’t have to carry it alone.

✨ What to expect:
✔️ A clearly defined topic
✔️ A targeted audience with shared experience
✔️ A small, thoughtful group setting to allow time for reflection and conversation

This is a safe, supportive space to connect, share, and feel understood.

👉 Register here: https://us02web.zoom.us/meeting/register/EHgkjd0qRNWRjqIxnpc-XQ

Please share with families who may benefit. We’re stronger when we walk this journey together. 💙

01/05/2026

Many families enjoy gathering around the TV for the Super Bowl game! Whether you watch the final game of the season because you’re a football fanatic or because you enjoy the commercials and half-time show, please consider participating in KrabbeConnect’s Annual Super Bowl Squares Challenge.

The goal for any football team is to make it to the end zone and come out on top. At KrabbeConnect, our goal is similar … 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. So, let’s have a little fun and raise some money to help support those living with Krabbe disease.

Purchase by Jan 11th and be entered to win an extra prize - https://krabbeconnect.org/kcevent/annual-super-bowl-square-football-challenge/

01/05/2026

Many families enjoy gathering around the TV for the Superbowl game! Whether you watch the final game of the season because you’re a football fanatic or because you enjoy the commercials and half-time show, please consider participating in KrabbeConnect’s Annual Super Bowl Squares Challenge.

The goal for any football team is to make it to the end zone and come out on top. At KrabbeConnect, our goal is similar … 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. So, let’s have a little fun and raise some money to help support those living with Krabbe disease.

Purchase by Jan 11th and be entered to win an extra prize - https://krabbeconnect.org/kcevent/annual-super-bowl-square-football-challenge/

01/02/2026

Happy New Year from all of us at KrabbeConnect.

As we step into 2026, we want to pause and say thank you. Supporting a rare disease is not easy—when few are affected, awareness is limited, and funding is harder to secure. Yet you showed up. You believed in this mission. You gave anyway.

Because of you, families facing Krabbe disease are not alone. Because of you, critical research continues. Because of you, there is hope—hope for earlier diagnosis, better treatments, and one day, a cure.

We enter 2026 encouraged, determined, and deeply grateful for this community. Together, we are changing what’s possible for families impacted by Krabbe disease.

Thank you for standing with us. 💙