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!
Another equipment donation! Equipment will be issued on a first come first serve basis.
#krabbeconnect
#curekrabbecurekrabbe ... See MoreSee Less
0 CommentsComment on Facebook
We are grateful for any year-end donations to help us expand our efforts in #newbornscreening. Thank you for your continued commitment to #krabbeconnect! ... See MoreSee Less
0 CommentsComment on Facebook
Check out this holiday list for kiddos with complex medical needs. Thank you Rare Parenting for this list!
#curekrabbeCheck out or new #GIFTGUIDE for switch adapted toys!! See it here: rareparenting.com/switch-adapted-toys-kids/ #SLP ... See MoreSee Less
0 CommentsComment on Facebook
#thankyou - we have many families we were able to help this year through our support programs because of our supporters - YOU. We invite you to learn how we support families navigating #KrabbeDisease -https://bit.ly/krabbeassistance ... See MoreSee Less
1 CommentComment on Facebook
Thank you krabbeconnect for the help we received. Our family is going to enjoy our holidays with a little less stress this year. We hope many other families out there can feel this same this year as well.
Can you please throw out some hearts to our friend Bentley for rasing $630?
#thankyou Bentley and Brittany Shelton for you’re amazing fundraiser to help families in the hospital this holiday season navigating #KrabbeDisease
If you’re interested in helping Bentley smile even bigger, you can still donate here - bit.ly/bentleyfundraiser ... See MoreSee Less
0 CommentsComment on Facebook
As you enjoy all the Black Friday sales we invite you to reserve a $5 or $10 donation to Tammy Wilson fundraiser to help #curekrabbe.
Her family has navigated #krabbedisease twice. Marshall was diagnosed too late for treatment but he saved his brother’s life. Michael is a thriving and sweet teenager but when they were in the midst of the fight, they spent many months in the hospital.
We have several families right now spending the holidays in the hospital, so we invite you to give a little today so we can continue the fight to #curekrabbe ... See MoreSee Less
This content isn't available right now
When this happens, it's usually because the owner only shared it with a small group of people, changed who can see it or it's been deleted.1 CommentComment on Facebook
Tanner Ellenson