KrabbeConnect

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. 💙

12/26/2025

This past year was unimaginably challenging for the Wolford family. Their youngest daughter, Jayln, was diagnosed with Krabbe disease—a rare and fatal condition.

Desperate for answers, the family traveled to UPMC (University of Pittsburgh Medical Center), where they spent 156 days (5.5 months) as Jayln underwent a stem cell transplant to help slow the progression of the disease.

During their time at UPMC, Jayln’s mom, Karla, began advocating for change—reaching out to the North Dakota Newborn Screening Program and sharing her daughter’s story.

If North Dakota had screened newborns for Krabbe disease at birth, Jayln could have received a transplant before symptoms began, giving her a much better chance at improved outcomes.

KrabbeConnect is deeply grateful to Karla Wolford for using her voice to help drive meaningful change.

Every day, KrabbeConnect works to support families through equipment assistance, hardship relief, and research funding—because all individuals impacted, like Jayln, deserve more than treatment. They deserve a cure. 💙

To donate: https://www.pledge.to/2025-match-my-gift-to-krabbeconnect

12/25/2025

Happy Holidays from all of us at KrabbeConnect.

We are deeply grateful for each and every one of you who follows, supports, and believes in the work we do. Your compassion, advocacy, and generosity carry this mission forward and give hope to families facing Krabbe disease every day.

Together, we hold onto a shared vision: a future where every person diagnosed with Krabbe disease can live a full life—free from the burden of this disease. Until that day comes, please know how much your support truly means to us.

Wishing you and your loved ones peace, warmth, and hope this holiday season.

12/22/2025

As we reflect on 2025, we are overwhelmed with gratitude. 💚

To our incredible corporate partners—thank you for standing beside KrabbeConnect and the families we serve.

Your generosity fuels our mission to support patients, advance research, and advocate for early diagnosis and improved care. Because of you, families facing Krabbe disease had access to resources, community, and hope this year.

While the list of supporters is extensive and continually growing, we want to express our sincere appreciation to the many businesses who contributed time, funding, expertise, and compassion. This message is not all-inclusive—but every single contribution mattered.

Our families thank you. Our team thanks you. And together, we are making progress toward a cure.

12/18/2025

Amazing News! Our publication has been accepted by Orphanet Journal of Rare Disorders. A few last steps are needed before the journal will make it available to the public.

This milestone matters because:

*40+ families courageously participated, sharing detailed insights into their journey with Krabbe disease.

*Families met virtually with Engage Health to provide robust, real-world data about the challenges and decisions they faced.

*Dr. Nicholas Bascou and Dr. Paul Orchard provided expert oversight—ensuring the data was carefully reviewed, analyzed, and categorized to the highest scientific standards.

*This is the first study of its kind in Krabbe disease to compare caregiver burden across transplant timing and disease onset.

*These findings will help families and clinicians make more informed decisions about transplant and support future research, care, and advocacy efforts.

This publication is a testament to the strength of the Krabbe community and the ongoing commitment to improving care, quality of life, and access to treatment.

This critical research required an investment of more than $200,000, generously funded through a grant from the Rosenau Family Research Foundation.