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!
We're thrilled to welcome the incredible Sarah to the Krabbe Family Warrior Meeting on June 28 in Itasca, IL! 💜
With her deep connection to grief and #KrabbeDisease, Sarah brings compassion, insight, and heart to our community gathering.
More than 40 individuals impacted by Krabbe will be there — families who’ve had the opportunity to seek treatment, those who haven’t, and those grieving loved ones. No matter your journey, you belong here. Steps to register here: bit.ly/4iNlV9R
Join us as we stand united in the fight for a cure. 💪 #KrabbeWarrior #FamilyStrong ... See MoreSee Less
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Calling all researchers in #KrabbeDisease - Rosenau Family Research Foundation letter of intent is open. Two research projects #krabbeconnect is involved with due to RFRF funding are as follows:
1. Parent-Reported Disease Burden in Infantile and Late Infantile Krabbe Disease; A Comparison of Quality-of-Life Outcomes in Transplant and Non-or-Late Transplant Patients - publications will be available by the end of 2025. Presentations on the project will happen at the Krabbe Family Warrior Meeting on June 28th.
2. GenoKrabbe (Genotype/Phenotype Registry) - med.umn.edu/news/u-m-medical-school-receives-360000-grant-support-development-krabbe-disease-regi...
#curekrabbe
#scienceRosenau Family Research Foundation is now accepting Letters of Intent (LOI) for our 2025 spring grant cycle!
An LOI is the first step in the process to apply for grant funding. LOIs for the spring grant cycle are due July 31st, 2025.
Click for more information and to apply: rosenaufoundation.org/letter-of-intent/
Consideration will only be given to projects that:
1. Conduct research to develop or enhance treatments and cures for Krabbe disease and Cystic Fibrosis.
2. Promote education and awareness for the expansion of Newborn Screening, Krabbe disease, and Cystic Fibrosis; benefiting children with the increased probability of early identification and effective access to treatment.
Please email grants@rosenaufoundation.org with any questions. ... See MoreSee Less
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Happy Monday! We wanted to give a big shout-out to Kevin Cushman, Judy Cushman, and many other Krabbe families who continue to fight for #KrabbeDisease newborn screening in WI.
Krabbe was recommended for the WI newborn screening panel. The final vote by the WI NBS Committee will occur in September 2025.
#curekrabbe
#newbornscreening
#krabbeconnect
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Ella's Welcome Wish is thoughtfully created to offer warmth and support during one of the most challenging times in a family's life—no matter the age at diagnosis.
At Ella’s Welcome Wish, we want every family to know they are not alone. You have support, resources, and a community that cares. Together, we can help you navigate this journey one step at a time.
krabbeconnect.org/programs-events/ellas-welcome-wish/ ... See MoreSee Less
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We're sharing a powerful video highlighting how two families have navigated life with #KrabbeDisease. At KrabbeConnect, we aim to support you with insights and a network of knowledgeable experts. Every family's journey is unique—there’s no right or wrong way to face Krabbe disease. We're here to walk alongside you, wherever you are on the path.
Call us at 1800-800-5509 or email us at info@krabbeconnect.org ... See MoreSee Less
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Happy Monday! Are you wondering if you can still register for the Krabbe Family Warrior Meeting in Itasca, IL?
The answer is YES! We encourage you to act fast, as hotel spots are limited to our group. Simply click the photo and follow the 3 easy steps to complete your registration.
How many are registered as of today? We have nearly 40 attendees impacted by #KrabbeDisease
We look forward to embracing each other soon - #curekrabbe ... See MoreSee Less
2025 Krabbe Family Warrior Meet-up at the United Leukodystrophy Family Conference - KrabbeConnect
krabbeconnect.org
This family meet-up will feature Krabbe-specific scientific, advocacy, and family support sessions. This meeting is designed to empower patients and their families by providing information and tools t...0 CommentsComment on Facebook