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!
Anyone in need of some Pampered Chef? Our board member Tammy Wilson is doing a fundraiser in honor of her sons, Marshall and Michael. Marshall is no longer living but Michael is doing really well. #curekrabbe
We’ve been in awe this past year as so many families in our community are helping to improve the lives of those with #krabbedisease.
Each of you are a blessing and we thank you from the bottom of our hearts 💕
Please note- this event closes on Sunday. ... See MoreSee Less
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✨ It’s here! The details are LIVE for the 2nd Annual Anywhere Strides to #CureKrabbe. This one-of-a-kind event unites our community across the globe in the fight against Krabbe disease. 💙
The need is greater than ever—families are counting on increased financial support. 💪 Your participation makes a difference.
👟 Register today for just $25 and stride with us—anywhere, anytime—to bring hope and change.
Take 1 minute to sign up here -https://krabbeconnect.org/kcevent/anywhere-strides-5k-walk-run-to-curekrabbe/
*Incentives for those that fundraise!
#curekrabbe #krabbeconnect #2025strides ... See MoreSee Less
2025 Anywhere Strides 5k Walk/Run to #curekrabbe! - KrabbeConnect
krabbeconnect.org
Join Now Join us for a meaningful journey towards a cure! Anywhere Strides invites you to lace up your sneakers and join our 5k walk or run, all in support to #curekrabbe. By participating in Anywhere...1 CommentsComment on Facebook
At #KrabbeConnect, we’re here to remind you that you’re not alone. Whether you’re a parent, grandparent, or loved one, we’ll connect you with others who truly understand your journey.
“As Mary, Belle’s grandma, shared in her story: ‘Sometimes the best way to carry a heavy weight is to share it with another." 💙
No family should face Krabbe disease alone — let us walk with you. Reach out today at info@krabbeconnect.org
#KrabbeDisease #curekrabbe #grandparents ... See MoreSee Less
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📣 T-7 days until 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 begins! Throughout the month of September we will shine a light on Krabbe disease. 💙💚 #curekrabbe #leukodystrophyawareness ... See MoreSee Less
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ICYMI- you can help add #krabbedisease to the #newbornscreening panel in California. Just send us an email at info@krabbeconnect.org if you're interested!
Thanks for your help to #curekrabbe! ... See MoreSee Less
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Meet Cloud—a brave kid living with Krabbe disease who created original artwork just for this auction -💙
We need YOUR help to turn creativity into a cure!
Here’s how to join in the fun:
1️⃣ Download the Handbid App (Apple or Google Play) & register
2️⃣ Search “Bloom for a Cure” and enter the event
3️⃣ Start bidding! Add your form of payment, place bids, and watch for outbid alerts
4️⃣ Spread the word—invite your friends & family to join the bidding too!
Link to tickets/access auction - krabbeconnect.org/kcevent/bloom-for-a-cure/
⏰ Auction closes August 23 at 9 PM EST—let’s rally together for a cure! ... See MoreSee Less
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