
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 see more states saying “yes” to #newbornscreening for #krabbedisease. We are now at 15 states screening with 9 more (states in light orange) likely to add it within the next 1-2 years.
For the most up-to-date map and information on Krabbe disease NBS visit - krabbeconnect.org/krabbe-disease/krabbe-disease-newborn-screening/
#curekrabbe #krabbeconnect #kdnewbornscreening ... See MoreSee Less
4 CommentsComment on Facebook
Bloom for a Cure is more than just an event — it’s a powerful step forward in helping kids and adults live free of #KrabbeDisease
Events like this help us fund critical research and drive real progress in improving the science and support behind this devastating disease. But we can’t do it without you.
Our goal is to welcome 100+ attendees, and we’re just over 2 weeks away!
Expect a night full of fun, meaning, and the deep reward of knowing you’re part of something bigger — a movement to change lives.
Join us. Stand with us. Bloom with us - krabbeconnect.org/kcevent/bloom-for-a-cure/ ... See MoreSee Less
0 CommentsComment on Facebook
We are beyond grateful for our incredible sponsors and the overwhelming support we've received for the 5th Annual Bravery for Avery Golf Tournament!
While golf spots are officially SOLD OUT, we invite you to show your support by donating any amount in honor of Avery Coupe.
Avery's journey began at just 4 months old, her parents, Lindsey and Kevin, noticed that she was regressing in her development. What started as feeding difficulties soon led to a heart-wrenching 5-month search for answers, ultimately resulting in a diagnosis of Krabbe disease. Avery fought bravely and lived to be 18 months old. She is deeply loved and profoundly missed by her family and all who knew her.
Donations and be made here: events.handbid.com/lp/2025-bravery-for-avery-golf-tournament/donations
**All proceeds benefit the BrAvery for Avery Fund at #krabbeconnect which works to support Krabbe disease research and/or support families navigating Krabbe disease. ... See MoreSee Less
0 CommentsComment on Facebook
The Krabbe disease Patient Journey Map works by simplifying the two pathways of Krabbe disease: the symptomatic and the pre-symptomatic journey. We invite you to share this downloadable resource with others - krabbeconnect.org/education/patient-journey-maps-and-resources/ ... See MoreSee Less
0 CommentsComment on Facebook
The KrabbeConnect Hero page helps others to understand the impact of #KrabbeDisease by educating healthcare professionals and companies on the numerous lives affected as well as helps provide a place of remembrance.
At KrabbeConnect we never want to forget about any loved one diagnosed with Krabbe disease and gone before we could #curekrabbe.
ADD YOUR HERO TODAY HERE - krabbeconnect.org/our-heroes/
#curekrabbe #krabbehero #krabbeconnect ... See MoreSee Less
0 CommentsComment on Facebook
Spread the word and reach out to KrabbeConnect if you’re interested in helping.
#curekrabbe ... See MoreSee Less
1 CommentsComment on Facebook