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!
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
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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
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A good read outlining changes at the federal level to important health programs.
Board member, Lesa Brackbill, personal story was highlighted in the article.
We value these health programs at #krabbeconnect and hope to see them return.
#curekrabbe ... See MoreSee Less
How Having a Baby Is Changing Under Trump
time.com
Cuts to federal health institutions could alter newborn hearing and rare disease screening programs.0 CommentsComment on Facebook
We’re excited to be a part of #thriventchoice A shout out to our special volunteer, Bill, who made this happen 💙
#cuerkrabbe #ThriventFinancial ... See MoreSee Less
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Navigating grief is tricky, no matter your path in #krabbedisease One common theme for families supporting a loved one with this disease is coping with grief.
1. Anticipatory Grief
2. Survivors' Grief
3. Chronic Sorrow
4. Grief of Lost Expectation
and MORE!!!! We encourage you to grab your spot today to be a part of this event here - bit.ly/4iNlV9R
Stipends are available to help families offset costs. If you have additional questions, please reach out soon at info@krabbeconnect.org We are here to help!
#cuerkrabbe #griefjourney ... See MoreSee Less
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