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!
Thank you to those who participated early on the #SuperBowl2025 Fundraiser. Join us tomorrow here - Super Bowl Early Bird Name Draw ... See MoreSee Less
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Super Bowl Early Bird Name DrawJan 14, 3:00pmPO Box 264, Rosemount, MN, United States, Minnesota 55068Did you participate early in the Super Bowl squares to #curekrabbe? Watch here- LIVE- Tuesday, January 14th at 3:00 pm CST | 4:00 PM EST to see if you're name is drawn.
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Happy FriYAY. Who do you want to see play in the #Super Bowl
2 days left to grab your squares for a chance to win a donated Dunkin Donuts gift card AND a free square on the 10x10 board.
Board squares available until sold out.
#krabbeconnect #curekrabbe ... See MoreSee Less
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We're excited to be presenting at the upcoming KTRN meeting hosted by Rosenau Family Research Foundation
If you want to attend this meeting, you can register here - rosenaufoundation.org/
#krabbeconnect NBS EIKD/LIKD Study is funded by #rfrf - publications from this study would not be possible without their grant support.
#curekrabbe ... See MoreSee Less
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We need your feedback for #krabbedisease support groups! The survey goes out on Friday, January 10th, 2024. Please be sure you're part of our newsletter and SMS contact list today.
Newsletter sign-up: krabbeconnect.org/ (scroll to the bottom to sign up)
SMS sign-up: mailchi.mp/911d8ce1da17/updatecontact
Note: If you're unsure if you're on our contact list, simply sign up again. The system will automatically remove duplicates. ... See MoreSee Less
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Super Bowl Squares Fundraiser is LIVE - what teams do you want to see in the final football game?
Remember - purchase by January 12th and you will be entered to win an additional prize.
#curekrabbe #SuperBowl2025 ... See MoreSee Less
2025 Super Bowl Square Challenge - KrabbeConnect
krabbeconnect.org
Super Bowl squares, also known as football squares, are often a fun staple of Super Bowl parties everywhere. In 2018 we initiated this fundraiser as a fun way to drive excitement about our mission at ...0 CommentsComment on Facebook