About KrabbeConnect
Founders, Stacy Pike-Langenfeld and Anne Rugari, formed KrabbeConnect, a 501 (c)(3) in 2017, to bridge the gap between Krabbe disease 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.
Learn More about KrabbeConnect
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!
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 - krabbeconnect.org/kcevent/annual-super-bowl-square-football-challenge/
#curekrabbe #superbowlsquares #krabbedisease ... See MoreSee Less
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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 - krabbeconnect.org/kcevent/annual-super-bowl-square-football-challenge/
#curekrabbe #superbowlsquares #krabbedisease ... See MoreSee Less
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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. 💙
#curekrabbe #happynewyear #thankyou ... See MoreSee Less
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To everyone who followed, shared, donated, advocated, and stood with us this year—thank you. Your support makes a difference for families navigating Krabbe disease. ... See MoreSee Less
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In the past two months, several families have received life-changing Krabbe disease diagnoses. Your support helps us show up with resources, guidance, and hope. Please help us unlock our $25,000 year-end goal.
Click here to donate- www.pledge.to/2025-match-my-gift-to-krabbeconnect ... See MoreSee Less
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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 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 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: www.pledge.to/2025-match-my-gift-to-krabbeconnect ... See MoreSee Less
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