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!
💥 Carry Their Name. Fuel the Fight. 💥
Krabbe families—this is for you.
For a $10 donation, your loved one’s name will be printed on Michelle’s race apparel as she takes on HYROX NYC 2026.
She runs with purpose. She runs for them.
⏳ Deadline: May 1, 2026
👉 Donate: secure.qgiv.com/for/enmhfht2f
👉 Add your hero: forms.gle/8LRukwHTYkiVNc3d9
Let’s fill her shirt with warriors. 💜 #curekrabbe ... See MoreSee Less
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Six kids recently received gene therapyA type of therapy that offers hope and promise for a cure for many genetic disorders. A working copy of the gene replaces the non-working copy of the gene. Gene therapy is at the forefront of many, a life-saving therapy for Krabbe disease. Today—it’s gone due to lack of funding.
Tomorrow, the President and Co-founder (Stacy Pike-Langenfeld) of KrabbeConnect will celebrate what would’ve been her daughter’s (Makayla) 25th birthday. Stacy, has dedicated her life to changing this—unpaid, tireless, relentless.
This week, join Michelle’s Hybrid for Hope:
25 push-ups. 25 pull-ups. 25 burpees. $25
Because small actions, together, create real change.
Because no therapy should disappear when lives are on the line.
To give click here: secure.qgiv.com/for/mkwctc
Like, follow, share Michelle's work to spread awareness and raise funds for a cure: www.facebook.com/share/1Cby8ahQt3/
#curekrabbe #hybridforhope ... See MoreSee Less
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Behind every Krabbe diagnosis is a story we don’t always see.
Meet Amanda DeRossett, one of our 2026 Krabbe Warrior Family Meeting speakers. 💙
After welcoming her son Tygh and facing his diagnosis, Amanda found herself in a place many caregivers quietly experience—but rarely talk about.
She lost herself.
Through depression.
Through emotional eating.
Through a cycle that felt impossible to break.
But her story doesn’t end there.
Amanda will courageously share her journey—what it felt like to lose herself, what helped her begin to heal, and how she found her way back to strength.
Join us on June 27th at the Krabbe disease Family Warrior Meeting as Amanda shares a story that so many will see themselves in—but may not have the words to express. Visit KrabbeConnect.org for all the details. ... See MoreSee Less
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The first year after a Krabbe diagnosis can feel overwhelming… filled with questions, fear, and emotions you never expected to carry.
You don’t have to navigate this alone. 💙
Join us for Connect & Learn: Navigating the First Year After Diagnosis, a supportive virtual gathering for families diagnosed within the past 12 months. This session will be led by licensed social worker Sarah Thomas, who understands the weight of this journey and will help guide conversation around processing emotions, coping, and finding your footing.
✨ A safe space to share
✨ A place to connect with others who understand
✨ Support when you need it most
👉 Sign up today: us02web.zoom.us/meeting/register/C3Vg0LqWQyODWcAO9WHnQg ... See MoreSee Less
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ICYMI - 📣 Parents & Caregivers — Your Voice Matters
Have you ever received a positive newborn screen result for Krabbe disease?
Researchers want to learn directly from you. This important study is exploring how healthcare providers communicate with families during one of the most emotional and overwhelming moments — so future conversations can be more compassionate, clear, and supportive. 💜
🔹 Who can join:
Parents or caregivers of children who had a positive newborn screen result for Krabbe disease. Thank you for helping shape better care for our community. 💜
#CureKrabbe #RareDisease #NewbornScreening #KrabbeConnect ... See MoreSee Less
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This is what community looks like. 💙
Families, caregivers, and warriors coming together to share stories, support one another, and remind each other they are not alone in this fight.
📍 Krabbe Family Warrior Meeting
🗓 June 27, 2026
If you’ve ever needed a place where people truly understand—this is it.
All info here - krabbeconnect.org/kcevent/krabbe-family-warrior-meet-up-at-the-united-leukodystrophy-family-confe...
#curekrabbe #KrabbeFamilies #YouAreNotAlone ... See MoreSee Less
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