KrabbeConnect

5 days ago

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 she & Newborn Screening Awareness Month 💙🧡

Today we begin a month dedicated to awareness, education, action—and the families who give this work meaning.

Krabbe disease is one of more than 50 types of leukodystrophies. For families affected by these diseases, awareness matters. Early diagnosis matters. Newborn screening matters. Research matters. And every person who helps share that message can make a difference.

Throughout September, we invite YOU to show up with us. You can:

Share our fact cards and help someone learn something they didn’t know yesterday.

Tell your story or share the story of a Krabbe Hero you love.

Join Anywhere Strides September 4–13—walk, run, bike or roll as we complete 39 miles together to #curekrabbe.

Change your profile picture to our awareness frame.

Talk about newborn screening and why early detection can change the course of a child’s life.

Share our posts. Sometimes one click is all it takes to put important information in front of the right person.

You don’t have to be personally impacted by Krabbe disease to make an impact.

Learn. Share. Move. Advocate. Show up.

💙🧡 How will YOU show up this September? ... See MoreSee Less

KrabbeConnect

6 days ago

💙 Tomorrow, we turn up the volume.

September is Leukodystrophy & Newborn Screening Awareness Month—and throughout the month, we’ll be sharing stories, facts, faces, and reasons why awareness matters.

But before we begin, we want to hear from YOU.

Finish this sentence:

💬 I show up for the Krabbe community because ____________.

Maybe it’s for your child.
A grandchild.
A sibling.
A patient.
A family you love.
Or because you believe every baby deserves the chance for an early diagnosis.

Drop your answer in the comments. 👇

Tomorrow, we begin a month of showing up—together. 💙

#KrabbeConnect #CureKrabbe #KrabbeDisease #LeukodystrophyAwareness #NewbornScreening NBS ... See MoreSee Less

KrabbeConnect is in Kentucky.

1 week ago

👕 Want to guarantee your T-shirt size? Register by September 3rd!

Tygh’s Strides to #curekrabbe 5K is coming up, and we want to make sure your race-day shirt fits just right! ❤️

Register NOW to guarantee your preferred T-shirt size. Sizes will be limited once we place the order.

📅 September 26, 2026
📍 Shepherdsville, KY
🏃 Run. Walk. Show up. Help us #curekrabbe.

Don’t wait—register today and secure your shirt size - krabbeconnect.org/kcevent/tyghs-strides-to-curekrabbe-5k/ ... See MoreSee Less

KrabbeConnect

1 week ago

📅 SAVE THE DATE — 2027 FAMILY WARRIOR MEETING!

We know our Krabbe community is full of planners—travel, equipment, medications, schedules, accessible transportation and everything in between takes time to coordinate. So, we’re giving you the dates early! 💙🧡

KrabbeConnect Family Warrior Meeting
📍 Hilton Chicago/Oak Brook Resort

June 25: Arrive & get settled
June 26: All-day Family Warrior Meeting + family activities
June 27: Depart for home

If you’ve joined us before, you know how special it is to spend time with people who truly understand this journey. If you’ve never attended, we hope 2027 is your year.

More details will be coming, but for now—save the dates and start planning!

💙 Connection. Support. Education. Community.

#KrabbeConnect #KrabbeDisease #FamilyWarriors #KrabbeCommunity #SaveTheDate ... See MoreSee Less

KrabbeConnect

2 weeks ago

💙🧡 Our September Leukodystrophy & 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