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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!
Happy Friday! Ten Candles, Endless Hope event tickets are on sale - krabbeconnect.org/kcevent/ten-candles-endless-hope/
You won't want to miss this great event during LeukodystrophyThe leukodystrophies comprise a group of progressive, genetic disorders mainly affecting the central nervous system (CNS). Most leukodystophies result from a disruption of the growth of the myelin sh... Awareness Month, September 7th, 2024. This event will recognize the Brackbill family’s daughter, Tori, and all the heroes in the ongoing fight against Krabbe disease.
If you can't attend, contact us at info@krabbeconnect.org to inquire how you can help by donating to the silent or live auction. You can also help by sharing this post so we can reach more people.
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When this happens, it's usually because the owner only shared it with a small group of people, changed who can see it or it's been deleted.2 CommentsComment on Facebook
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It’s officially available. The recording from our meeting. We’re so grateful for the partnership we have with United Leukodystrophy Foundation.
Together we are stronger! #curekrabbeA Huge THANK YOU to KrabbeConnect for hosting Krabbe Family Warrior Meeting at the ULF 2024 Family Conference! If you missed out - check out the Krabbe Disease specific session here: youtu.be/SQ9uJU1dFMU
#ULF #leukodystrophyThe leukodystrophies comprise a group of progressive, genetic disorders mainly affecting the central nervous system (CNS). Most leukodystophies result from a disruption of the growth of the myelin sh... #Krabbe #CollaborateUntilCured ... See MoreSee Less
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Yes we help international families! We kindly ask if you would help us by sharing this post because every family deserves someone to talk to to help them navigate #KrabbeDisease.
#curekrabbe #krabbeconnect ... See MoreSee Less
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Alex Charyna?
#krabbeconnect and Lindsey Coupe are looking for a few volunteer to help with some of the activities at this fundraiser. Our very own board President, Stacy Pike-Langenfeld will be in attendance. All volunteers receive dinner. Private message Lindsey Coupe by end of day tomorrow (July 18th) if you can help. 🥰We are grateful to the Coupe family who continues to be a powerhouse in helping further research efforts on Krabbe disease. Please, join #krabbeconnect and the Coupe family in the 4th Annual BrAvery for Avery Golf Tournament in Rhode Island. If you can't join us, please share this post.
All the details can be found here-
krabbeconnect.org/kcevent/4th-annual-bravery-for-avery-golf-tournament/
#curekrabbe #braveryforavery #coupefamily ... See MoreSee Less
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We've had many families participate and we're so grateful! However, we need more families who were identified with #krabbedisease through #newbornscreening or due to prior family history to participate.
The rationale for the study:
1. No published studies assessing 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.
2. With increasing focus on patient experience data when designing clinical trials for
potential therapies, there is a critical need to explore patient/family-centered
experiences and their daily struggles.
3. The data will be used to educate healthcare providers, payors, and industry on the participants' responses related to newborn screening and disease-modifying treatments for KD.
#curekrabbe ... See MoreSee Less
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Get your tickets! We can’t wait to see you in Hershey, PA to help #curekrabbe 💕 ... See MoreSee Less
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