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!
🌸 Calling all East Coast friends, supporters, researchers, and change-makers! 🌸
We’re coming together for Bloom for a Cure — a heartfelt event to raise awareness and critical funds for families impacted by Krabbe disease.
This isn’t just an event — it’s a movement of hope, action, and community. A space where families, medical experts, and advocates unite to support research, share resources, and bring comfort to those facing this devastating diagnosis.
💜 Meet Bentley – an incredible 8-year-old living with Krabbe disease. He received a stem cell transplantTypically this refers to a bone marrow transplant with the goal of replacing non-working cells with healthy working cells. Bone marrow is a rich source of stem cells that have the unique ability to at 2 years of age — a treatment that extended his life, but not a cure. Bentley continues to inspire us daily with his strength and smile, and he reminds us why we must push forward. Research is urgently needed to improve outcomes and find a real cure.
🗓️ Mark your calendars!
📍 Hershey Gardens
✨ Family-friendly activities | Inspiring stories | Beautiful blooms | Silent auction & more!
Tickets, sponsorship, and details here - krabbeconnect.org/kcevent/bloom-for-a-cure/ ... See MoreSee Less
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Join us August 23rd in Coeur d’Alene, Idaho for a heartfelt fundraising dinner, honoring the life of Connor, a brave little boy who courageously fought Krabbe disease. We want to fill the room. Get your tickets today for $110 here - events.handbid.com/lp/connors-kure-for-krabbe
#curekrabbe #krabbeconnect ... See MoreSee Less
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Breaking news - #krabbeconnect is eager to learn more. Thank you, Chiesi Group ... See MoreSee Less
Chiesi Group Enters into Worldwide Licensing Agreement with Key2Brain AB to Advance Blood-Brain Barrier-Crossing Therapies for Lysosomal Storage Disorders
www.globenewswire.com
Collaboration will leverage Key2Brain’s technology to develop blood-brain barrier-crossing enzymeA protein needed by the body to break down certain substances by causing a biochemical reaction within the cells. In Krabbe disease, galactocerebrosidase is the deficient enzyme. Words that end in replacement therapies for lysosomal storage disorders ...0 CommentsComment on Facebook
Did you know every state screens newborns differently for rare diseases like Krabbe disease? That’s why KrabbeConnect created easy-to-use NBS State Fact Sheets to help educate and advocate for the addition of Krabbe disease to a NBS panel.
At KrabbeConnect, we understand that it takes a village of advocates, partners, and pertinent scientific information to gain NBS approval for a new condition. Thus, we invite you to email us at info@krabbeconnect.org should you need assistance with your Newborn Screening efforts.
If you don’t find an NBS Fact Sheet for your state, it means we’re still waiting to hear a family story from that area. Please contact us at info@krabbeconnect.org if you’re willing to share your experience.
#curekrabbe #kdnbs #newbornscreening #krabbeconnect ... See MoreSee Less
Krabbe Disease Newborn Screening State-by-State Fact Sheets - KrabbeConnect
krabbeconnect.org
Contact us to see how you can help support the efforts in getting Krabbe added to your state's newborn screening panel: Info@krabbeconnect.org.0 CommentsComment on Facebook
Check it out! We have new sponsors helping ensure families can attend the 2025 Krabbe Family Warrior Meeting. Please help us thank Kevin Coupe, Lindsey Coupe, Kasey Feldt, and Alex Feldt for joining forces with #krabbeconnect to help make an impact on #KrabbeDisease. Both families fight in honor of their hero - Avery Coupe and Dawson Feldt.
Please note, details of this event will be emailed out this week to all registered attendees. ... See MoreSee Less
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*Sound on* It truly was a good day for the inaugural Swing for Saylor Golf Tournament to help #curekrabbe We raised over $23,000!
A BIG shout out to Matt Wales Media IG and his friend Ty for this wonderful video recap showcasing our outstanding sponsors - Rosenau Family Research Foundation Technology By Design Akin Hills Pet Hospital Matt Wales Media IG
WE CAN'T THANK OUR ATTENDEES AND SPONSORS ENOUGH!!! ... See MoreSee Less
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