KrabbeConnect

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.

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.

10/25/2025

🌟 Look at the amazing progress in our to ! 🌟

Tara has taken the lead — raising over $1,000 in less than 24 hours! 🙌 We’re so grateful to her and to everyone walking, running, and donating to make a difference.

Each of you are an extraordinary gift to the Krabbe community. 💙 Your energy, generosity, and hope push us closer to a future free of this devastating disease.

There’s still time to join — log your miles, spread the word, and help us reach our goal for a great cause! 🏃‍♀️💪
👉 https://krabbeconnect.org/kcevent/anywhere-strides-5k-walk-run-to-curekrabbe/

10/23/2025

At KrabbeConnect, we recognize how overwhelming a diagnosis can feel, especially when it’s your loved one facing Krabbe disease for the first time. That’s why we created Ella’s Welcome Wish — a small packet of comfort and information that says: we’ve got you. Click this link to get yours - https://krabbeconnect.org/programs-events/ellas-welcome-wish/

10/22/2025

💙 We need YOU. Families facing Krabbe disease are fighting every single day — and your support helps them keep going.

Krabbe disease is challenging and life-impacting, but together we can bring hope and progress.

There are only 5 days left to join our Anywhere Strides Event! 🏃‍♀️💪

So far, we’ve raised $4,798 of our $20,000 goal — help us cross the finish line and make a lasting difference.

👉 Join or donate today: https://krabbeconnect.org/kcevent/anywhere-strides-5k-walk-run-to-curekrabbe/ - it takes seconds to sign up or donate. If you plan to participate (walk/run), be sure to download the racery app.

10/21/2025

Until we knock the ball out of the park and bring a cure to patients’ bedsides, our fight must continue—and we’re deeply grateful to all of you who stand with us. We couldn’t do it without your support. To our incredible followers and generous donors: thank you. Together, we’re making hope possible.

Address

Rosemount, MN

Telephone

+18008005509

Website

https://krabbeconnect.org/

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About Us

Founders, Stacy Pike and Anne Rugari, formed KrabbeConnect, a 501 (c)(3) in 2017, to bridge the gap between science and patient knowledge.

The idea for KrabbeConnect originated from the 2015 Family Centered-Krabbe Translational Research Network meeting (FC-KTRN), a collaborative meeting between researchers and families to aid in solving the uncertainties of Krabbe disease. Through KrabbeConnect, the foundation provides a platform to amplify the voice of patients, aiding researchers and drug developers in accelerating research for better treatments for Krabbe disease.

KrabbeConnect’s dedication and efforts will advance research, provide family support, enhance education, and raise awareness, one step at a time. The organization will encourage patients, caregivers, medical scientists, clinicians, industry, and the government to work together quickly to assure a better life for patients. KrabbeConnect believes advances are made when we align ourselves with the same goal, improving the quality of life of those diagnosed with Krabbe disease.

We encourage you to learn more about us by understanding our Mission, Vision, and Multi-Center Approach here. If you have questions or want to connect with us, please Contact Us. We would love to hear from you!