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!
Are you a nonprofit or researcher looking for funding to improve #KrabbeDisease - check out the opportunity below!
#curekrabbeOur Letter of Intent (LOI) deadline is January 31st, which means there are 3 WEEKS LEFT to submit your grant for consideration for funding!
Learn more and submit your LOI here: rosenaufoundation.org/letter-of-intent/
A LOI is the first step in the process to apply for grant funding.
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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Buffalo Bills
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.
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