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!
It's official! The first packages for Ella's Welcome Wish Kit shipped this week. We are so grateful to our volunteers, Jinea and David, for helping us make this program happen!
Have you or someone you love been diagnosed with #krabbedisease? Please visit -https://krabbeconnect.org/programs-events/ellas-welcome-wish/ to learn more about this program.
#curekrabbe ... See MoreSee Less
0 CommentsComment on Facebook
Lots of great feedback on our new brochure! You can download your free copy here - krabbeconnect.org/education-resources-news/
We will also have copies of our brochure at the Krabbe Family Warrior Meet-Up, June 28th. Want to join us for this event? You can register here - krabbeconnect.org/kcevent/krabbe-family-warrior-meet-up-at-the-united-leukodystrophy-family-confe...
#curekrabbe ... See MoreSee Less
0 CommentsComment on Facebook
Can you help us #thank Rosenau Family Research Foundation for their tremendous sponsorship to help the mission of #krabbeconnect - they are devoted to improving the lives of those diagnosed with Krabbe disease. We’re so grateful for their efforts and partnerships!
Please help us honor their sponsorship by filling the course. You can play golf or just attend the banquet dinner. Tickets available here - events.handbid.com/lp/swing-for-saylor-to-curekrabbe ... See MoreSee Less
Learn More
2025 Swing for Saylor Golf Tournament - KrabbeConnect
krabbeconnect.org
KrabbeConnect is excited to introduce a new and meaningful way to bring our community together—one that raises awareness and vital funds to support families affected by Krabbe disease. We are proud ...0 CommentsComment on Facebook
Are you in need of a gift idea for a coworker, or for a loved one navigating an illness? Perhaps you have a birthday coming up and you want to treat yourself 😍
Give See’s Candies a try! It’s a favorite on the West Coast! So many options to choose from and your purchase helps #curekrabbe ... See MoreSee Less
See’s Candies to Help #curekrabbe - KrabbeConnect
krabbeconnect.org
Sweeten hearts and change lives! Join Krabbeconnect’s Year-Round Candy Drive. Your support will help satisfy sweet cravings and fuel research for those affected by Krabbe disease. This is a great wa...0 CommentsComment on Facebook
We’re thrilled to introduce our new brochure—designed with you in mind.
This resource offers essential information to help you and your family better understand Krabbe disease and feel more supported as you navigate the journey ahead.
Want a printed copy? Just send us an email, and we’ll be happy to mail one directly to you.
#curekrabbe #krabbeconnect ... See MoreSee Less
0 CommentsComment on Facebook
Who is ready for golf season? The Swing for Saylor event is happening on June 1st, 2025, and if you register your team by the end of April, you will be entered to win a rangefinder!
Register individually or as a team here- events.handbid.com/lp/swing-for-saylor-to-curekrabbe
#curekrabbe #swingforsaylor ... See MoreSee Less
1 CommentsComment on Facebook