About Us
Founders, Stacy Pike-Langenfeld 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.
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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!
Over the next few weeks, we're going to do a series called "Throwback Thursdays". We'll use this time to let you know what we've accomplished as a community since KrabbeConnect was incorporated on February 5th, 2018.
First Up!
Project: Disease Burden and Treatment Considerations in Krabbe disease: The Caregiver Perspective
Goal of Project: Spread awareness and insights to help others understand the burden of navigating treatment for an individual diagnosed with Krabbe disease
Results: See poster photo below
Cost of Project: $22,537.54
**Note: The project's cost does not include KrabbeConnect's time and resources in presenting the poster at conferences. ... See MoreSee Less
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We welcome opportunities to spread awareness about #krabbedisease. Old York Cellars Winery works with nonprofits to help reach different audiences of individuals we can't.
Take a peek at the selection here - shop.oldyorkcellars.com/KrabbeConnect ... See MoreSee Less
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Angela Crocker Catchings
Week 3 of our 12-week series on "Get To Know Our Board". Last week, you learned about Lesa Brackbill. This week we want you to meet Hina Malik. She is one of the original 9 board members who helped form the infrastructure for KrabbeConnect. Learn more about Hina here - krabbeconnect.org/about-us/board-members/ ... See MoreSee Less
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It's been a while since we've talked about KrabbeCURES. This ongoing study will always be a part of KrabbeConnect and the National Organization on Rare Disorders (NORD).
KrabbeCURES is a versatile online system that securely collects and stores data for medical research. Without data, we won't #curekrabbe. We encourage you to take a moment and listen to this 45-minute webinar on the platform and why it's important to our community.
Click here to listen - tinyurl.com/krabbecures
Thank you to those who have participated already! ... See MoreSee Less
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A beautiful quote by a participant in the IKD/LIKD #krabbedisease study. The participant felt heard and the participant's insights will be used to help us publish the impact of HSCTHematopoietic stem cell transplantation (HSCT), a type of transplantation using multipotent hematopoietic stem cells typically derived from bone marrow, peripheral blood, or that from umbilical cord b... on quality of life or family functioning for Krabbe disease. Learn how you can participate here - krabbeconnect.org/research-studies-trials/nbs-study/ ... See MoreSee Less
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ICYMI -- Love for Lily and Melissa Shoemaker are change markers for the state of Maryland. The #KrabbeDisease and #RareDisease community thank you for your incredible efforts.
Cheer to your incredible advocacy efforts!
#curekrabbe #lily #parker ... See MoreSee Less
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