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!
Sending love and strength this Valentine’s Day to all the families impacted by Krabbe disease. Your courage, resilience, and unwavering love inspires us all.
Today, we stand with you, celebrating the powerful bond of family and the hope that brighter days are ahead. ❤️
#curekrabbe #KrabbeDisease #ValentinesDay ... See MoreSee Less
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Thank you for sharing your story Brittany Shelton! We hope a pharma company will come forward to help us continue this clinical trialA clinical trial is research designed to understand the safety and efficacy of a drug, biologic or device. There are 4 phases to most clinical trials from Phase 1 that seeks to answer safety concern.
We ask you to share this story over-and-over. We can’t give up the fight to #curekrabbe. ... See MoreSee Less
8-year-old in Stokes County fights rare brain disease
myfox8.com
WALNUT COVE, N.C. (WGHP) — To know Bentley Shelton is to love him. “He brings light to everybody that meets him,” said Brittany Shelton, Bentley’s mom. “He always smiles.…5 CommentsComment on Facebook
@everyone - thank you from the bottom of our hearts for caring and sharing ❤️. We are grateful for each one of you.
I’m from Ohio, my granddaughter was the first preemie to be diagnosed with infantile Krabbe. At 2 weeks old she underwent chemo and BMT, she’s 8 months old now, she was supposed to go for gene therapyA type of therapy that offers hope and promise for a cure for many genetic disorders. A working copy of the gene replaces the non-working copy of the gene. Gene therapy is at the forefront of many in March. We were told that the company got bought out and the new company didn’t want to fund the trials. My heart breaks for these children, without treatment most wont live past 2 years old, possibly my granddaughter.
Is this something we should be contacting companies directly about? For example Biotech businesses in the UK that currently work on Leukodystrophies? Or is this meant to be a social campaign only?
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It's been a while since we've talked about #krabbecures This is a vital engagement study that collects patient/caregiver-reported insights to help improve outcomes for #krabbedisease.
If you want to help make a change, please consider participating today! ... See MoreSee Less
KrabbeCURES - KrabbeConnect
krabbeconnect.org
Make a Difference! Participate in the KrabbeCURES Engagement Study by clicking the button below. Drive Research Forward: Sign up for KrabbeCURES! Krabbe Community United Research and Engagement Study ...0 CommentsComment on Facebook
A big thank you to all the individuals who support our mission. We want to share a recent equipment exchange program success! Bentley, a handsome little guy with late-infantile #krabbedisease (transplanted), is all smiles in his "new-to-him" specialty car seat, and it wouldn't have been possible without you! ❤️ ... See MoreSee Less
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That seat looks amazing!!! 😍
So happy to see that it fits him so well. 💙
Great news! Some of the findings from the recent study on NBS for IKD and LIKD were presented at the 2025 Worldsymposia by Dr. Nicholas Bascou.
A special thank you to the families that completed a 90-minute interview with Engage Health Inc. staff for the data collection. Each participant will receive a copy of the poster from Engage Health soon!
We thank the Rosenau Family Research Foundation for their tremendous funding support for this project.
We also want to thank the United Leukodystrophy Foundation and Partners for Krabbe Research Foundation for helping promote this important study.
Stay tuned as we work to get the full study published in a medical journal. ... See MoreSee Less
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#krabbeconnect thanks Dr. Jim Wilson for his work in rare diseases and looks forward to learning more about how his company, Gemma Biotherapeutics, can help bring gene therapy to #KrabbeDisease. ... See MoreSee Less
1 CommentComment on Facebook
Gemmabio is based in Philly!! 💃💃💃