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!
For many, Monday means back to routine after a weekend of rest.
But for families caring for a loved one impacted by Krabbe disease, weekends don’t always look different from weekdays. The medications still need to be given. The therapies still need to happen. The equipment still needs managing. The monitoring never really pauses.
At KrabbeConnect, we see you.
And while your Monday may look different than most — please know this:
We keep working for you.
We advocate for you.
We push for newborn screening.
We support research.
We build programs to ease the burden where we can.
We are with you — today and every day.
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Saturday, February 28 is Rare Disease Day.
Bentley’s transplant gives him more years — but Krabbe still needs a cure.
Funding rare disease research is hard.
Help us change that.
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Sleep. Or the lack of it.
In our peer-reviewed publication, Caregiver-Reported Disease Burden in Krabbe Disease: Evaluating Outcomes of Hematopoietic Stem Cell Transplantation, families shared what sleep really looks like while caring for a child with infantile Krabbe disease (IKD), transplanted.
Theses are just a few of the quotes we received. These quotes reflect chronic exhaustion, anxiety, long-term health impacts, and the invisible toll rare disease caregiving takes on families.
This is why caregiver-reported data matters.
This is why newborn screening matters.
This is why access to treatment, resources, and coordinated care matters.
When we talk about outcomes, we must talk about the whole family. We invite families and individuals living with Krabbe disease to comment further on sleep patterns.
📖 Scan to read the full peer-reviewed article.
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Nikola’s story is why we show up. 💛
It’s why we build community.
It’s why we fund research.
It’s why we refuse to stop pushing for better outcomes for families facing Krabbe disease.
Now we’re inviting you to be part of that hope.
⛳ Putt-Putt to #CureKrabbe isn’t just a fun night out — it’s a chance to stand beside families like Nikola’s and say, you are not alone.
Every ticket.
Every sponsorship.
Every single putt.
It all helps reduce the medical burden for families and fuels the work that moves us closer to a cure.
Come laugh. Compete. Connect. Make a difference. Register here today - krabbeconnect.org/kcevent/putt-putt-to-curekrabbe/
🎥 Watch Nikola’s full story here:
youtu.be/xLEF26UuetY?si=KwHT9TH7urYabo2Y
Then grab your putter and register to join us.
Because when we show up together — hope gets louder. 💙
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💙🧡 **Rare Disease Day – February 28** 🧡💙
On February 28th, we join millions around the world to recognize **Rare Disease Day** — a day dedicated to raising awareness, advancing research, and standing alongside families navigating rare conditions like **Krabbe disease**.
At KrabbeConnect, we “Show Our Stripes” for:
🧬 Earlier diagnosis through newborn screening
💛 Stronger patient support and reduced medical burden
🔬 Innovative research and treatment development
🌎 A future where no family faces Krabbe alone
Krabbe disease may be rare, but our community is powerful. Together, we amplify voices, educate policymakers, support families, and push for progress.
📸 Download the “Show Your Stripes” template and tell us who you’re showing your stripes for.
Tag us and use #RareDiseaseDay #CureKrabbe #KrabbeDisease
Because rare is many. And together, we are louder.
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For children identified through newborn screening as low-risk for late-onset Krabbe disease, progression in infancy is less likely — and follow-up can be thoughtfully tailored. We invite you to review the graphic below or check out the full publication here - pubmed.ncbi.nlm.nih.gov/33832819/
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