KrabbeConnect

5 days ago

💙🧡 Our September 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 she & Newborn Screening Awareness Month Facebook Frame is HERE!

Help us fill social media with the faces of those we love. Add a photo of your loved one to our “I Love Someone with Krabbe” frame and use it as your Facebook profile picture throughout September.

It may look a little tricky—but it’s easy to do with Canva, and Canva is free!

Quick steps:

Create or log into a free Canva account.
Upload the KrabbeConnect awareness frame and a photo of your loved one.
Place the photo behind the frame and resize it to fit inside the center circle.
Download your finished image and add it as your Facebook profile picture.
💡 Want to hit the EASY button? Email your loved one’s photo to kasey@krabbeconnect.org, and Kasey will create it for you!

September is about awareness, education and action—and this is just the beginning. Stay tuned for more simple ways you can participate throughout Leukodystrophy & Newborn Screening Awareness Month.

💙🧡 Together, let’s make Krabbe disease visible.

#KrabbeDisease #leukodystrophyawareness #newbornscreening #curekrabbe ... See MoreSee Less

KrabbeConnect

7 days ago

Many people don’t fully understand how 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 (hematopoietic stem cell transplantTypically this refers to a bone marrow transplant with the goal of replacing non-working cells with healthy working cells.  Bone marrow is a rich source of stem cells that have the unique ability to d) works for Krabbe disease.

The actual infusion of donor stem cells is relatively simple—but getting the body ready for those cells is not. Patients undergo an intensive chemotherapy regimen to make space in the bone marrow for the new donor cells to engraft and begin producing the enzymeA protein needed by the body to break down certain substances by causing a biochemical reaction within the cells. In Krabbe disease, galactocerebrosidase is the deficient enzyme.  Words that end in ‘a the body is missing.

When performed early enough, HSCT can help slow or stabilize the progression of Krabbe disease—but it is not a cure. Children can still face significant challenges and long-term effects of the disease.

That’s why treatment is progress, but it isn’t the finish line.

We continue the fight to #curekrabbe. 💙 ... See MoreSee Less

KrabbeConnect

1 week ago

Have a piece of equipment your loved one has outgrown or no longer needs? 💙

Did you know KrabbeConnect can help find it a new home with another Krabbe family—and we’ll even cover the shipping costs?

Your unused equipment could make a meaningful difference for another family navigating Krabbe disease.

Learn more about our Patient Assistance Program:
krabbeconnect.org/community-engagement/krabbeconnect-patient-assistance-program/

Pass it on. Help another family. 💙 ... See MoreSee Less

KrabbeConnect

2 weeks ago

Every face has a story. Every story gives us another reason to keep fighting. 🧡💙

This September, during Leukodystrophy & Newborn Screening Awareness Month, we’re honoring the incredible individuals and families who are at the heart of everything we do.

Our Krabbe Heroes page celebrates those living with Krabbe disease and remembers those we have lost. Their lives remind us why early diagnosis matters, newborn screening matters, research matters—and why we cannot stop until there is a cure.

🧡 Visit our Heroes page and meet the faces behind our mission - krabbeconnect.org/our-heroes/

Is your loved one missing from the page, or is it time for an updated photo? We would be honored to include them.

Awareness creates hope. Hope drives progress.

#KrabbeDisease #leukodystrophyawareness #NewbornScreening #nbsawareness #krabbeheroes #curekrabbe ... See MoreSee Less

KrabbeConnect

2 weeks ago

Your Experience Can Help #curekrabbe 💙🧡

Every Krabbe story matters. KrabbeCURES gives patients and families an opportunity to share their experiences and contribute directly to research—helping researchers better understand Krabbe disease, its progression, and where important gaps remain. Participation is free and voluntary.

Your experience is more than a story—it’s data that can help move research forward.

Learn more and participate in KrabbeCURES - krabbeconnect.org/community-engagement/krabbecures/

#krabbecures #curekrabbe #KrabbeDisease #RareDiseaseResearch ... See MoreSee Less