KrabbeConnect

11/14/2025

Thank you Special Books by Special Kids for interviewing the Werner family. We invite you to learn about their journey with here - https://youtu.be/dmNg7HRztD8

DJ has Krabbe disease, a rare condition that prevents him from walking, talking, or moving his body independently. His life is expected to be significantly shortened, but his family wants others to see the full person they know so well. DJ has his own personality, preferences, and ways of communicating. If you slow down and pay attention, you’ll notice just how much he shares. You can watch this full video in the comments below.

11/13/2025

Sleep and mental health were the areas of life most impacted for all IKD caregivers as well as LIKD transplanted late/not. LIKD transplanted early were most impacted by sleep and relationship with the spouse/partner as well as physical health.
(Scale: 1 = “not at all” to 5 = “extreme”)

These findings come from the caregiver study conducted by KrabbeConnect and Engage Health Inc., through a grant funded by the Rosenau Family Research Foundation

A manuscript from this two-year project has been submitted for publication—we’ll keep you updated when it’s released.

💙 Thank you to all the families who participated and helped make this research possible.

11/11/2025

Today, we pause to honor and thank all who have served our country with courage, sacrifice, and unwavering dedication. Your service and commitment protect the freedoms we hold dear.

A special shoutout goes to the veterans and active-duty service members within the Krabbe community — those who not only serve our nation but also serve at home, caring for a loved one affected by Krabbe disease. Your strength and compassion inspire us all.

From all of us at KrabbeConnect, we salute you today and every day. 💙

11/10/2025

ICYMI

If you’re a family navigating Krabbe disease and could use some extra support this holiday season, we invite you to learn more and apply-
👉 https://krabbeconnect.org/.../krabbe-family-holiday.../

11/07/2025

💚 Give Hope This Holiday Season 💚

Meet Jayln, a bright and resilient 2½-year-old who continues to fight Krabbe disease with strength and smiles. Jayln is stable after a stem cell transplant but is still in search of a cure.

This holiday season, you can make twice the impact! Every dollar donated to KrabbeConnect through December 31st will be matched—up to $25,000!

✨ Together, we can give more children like Jayln a chance at life.

👉 Like, share, and spread hope this season by helping us reach families in need.

Donate today at https://www.pledge.to/2025-match-my-gift-to-krabbeconnect.

11/05/2025

Our Patient Assistance Program is one of the most utilized services we offer—reflecting the significant financial burden families face when caring for a loved one with Krabbe disease.

The chart below highlights the average annual costs associated with care, with ranges varying by disease type and treatment status:

Infantile Krabbe Disease (IKD), transplanted late or not at all: $0–$75,000

Infantile Krabbe Disease (IKD), transplanted early: $0–$12,500

Later-onset Krabbe Disease (LIKD), transplanted late or not at all: $0–$20,000

Later-onset Krabbe Disease (LIKD), transplanted early: $0–$2,500

Your generosity makes our patient assistance program possible. Thank you to everyone who continues to give—your compassion helps ease the heavy financial and emotional load families carry every day. 💚

11/04/2025

🎁 Holiday Grant Opportunity for Krabbe Families
We are proud to announce the KrabbeConnect Holiday Grant Program—designed to help families impacted by Krabbe disease cover special holiday expenses and brighten the season.

If you’re a family navigating Krabbe disease and could use some extra support this holiday season, we invite you to learn more and apply-
👉 https://krabbeconnect.org/kcevent/krabbe-family-holiday-grant-program/

11/03/2025

KrabbeConnect extends our heartfelt gratitude to all the families who helped make a difference. Because of your voices and advocacy, future children diagnosed with Krabbe disease in these states now have a chance at life. Together, we’re building a brighter future.

The best part - Oregon and New Mexico will report out all forms of

10/31/2025

Wishing you a spooktacular Halloween! 🎃
From all of us at KrabbeConnect, we hope you and your little goblins have a fun, safe, and candy-filled night!

We’d love to share more of your Halloween moments in the years to come—attach your photo below to give us permission to feature your adorable goblins in future posts and celebrations.

Happy Halloween from your KrabbeConnect family! 🕸️🦇

10/30/2025

As the holiday season approaches, we know it brings both joy and challenges for families affected by Krabbe disease. We’re honored to launch the 4th annual Krabbe Family Holiday Grant Program—offering financial assistance to help ease the burdens of the season. Priority will be given to new applicants, but we’ll do our best to accommodate all families who apply.

Stay tuned - application coming soon!

10/28/2025

KrabbeConnect is encouraging states to use a psychosine level greater than 2 nM ( versus greater than 10 nM) as the threshold when confirming a diagnosis of Krabbe disease.

Why does this matter?

Using this lower threshold helps ensure that children with late-onset forms of Krabbe disease are identified as early as possible. Early detection means families can access treatment and care before symptoms progress, reducing the risk of permanent damage.

💬 What do you think? Your feedback helps us advocate for the best outcomes for all families affected by Krabbe disease. Comment below!

10/27/2025

Because of YOU, our amazing community of walkers, runners, fundraisers, and supporters, Anywhere Strides to was a tremendous success!

👟 100+ participants
🏃‍♀️ 351.79 miles logged
💰 $10,628 raised!

Every step you took, every dollar you donated, and every share you made helps bring us closer to a world free of Krabbe disease. You’ve shown families impacted by this devastating condition that they are not alone—and that hope is stronger when we stride together.

From all of us at KrabbeConnect—thank you for caring, moving, and making a difference.