KrabbeConnect

We're thrilled about this grant! It was inspired by KrabbeConnect, and we’re fully committed to supporting it every step of the way. Our goal is to make it easier for families navigating a Krabbe disease diagnosis by providing deeper insights into the condition’s characteristics, ultimately enhancing the conversation with newly diagnosed patients.

While we are thrilled that Krabbe disease has been recommended for inclusion in Oregon's newborn screening panel, we urge the state to reconsider the cutoff value, reducing it from 10 to 2, in order to save more lives. A psychosine cutoff value of 10 will only identify the most severely affected babies. Our hearts go out to all the families whose voices made such an impact today—you made change happen.

Rare Disease Day is Friday, February 28th.?Providing a sharable chart to inform others about the 4 types of #krabbedisease At this time, we are still in need of a cure. #curekrabbe?#krabbeconnect?#rarediseaseday2025

ACT NOW: The RUSP alignment bill to add Krabbe newborn screening in Virginia is on the verge of a critical vote. It must pass out of the Senate Finance & Appropriations Committee by Feb 22—or it will fail. We can't let this critical opportunity slip away! With your help, we can make sure this bill gets the attention it deserves and helps save lives. Please take a moment to email and share this post with your friends and family so that we can spread the word far and wide. Click here to email the committee members: https://lnkd.in/e65p2s9U #KrabbeDisease #curekrabbe #everylifematters #virginia #actnow

A big thank you to all the individuals who support our mission. We want to share a recent equipment exchange program success! Bentley, a handsome little guy with late-infantile #krabbedisease (transplanted), is all smiles in his "new-to-him" specialty car seat, and it wouldn't have been possible without you! ??

Great news! Some of the findings from the recent study on NBS for IKD and LIKD were presented at the 2025 Worldsymposia by Dr. Nicholas Bascou. A special thank you to the families that completed a 90-minute interview with Engage Health staff for the data collection. Each participant will receive a copy of the poster from Engage Health soon! We thank the Rosenau Family Research Foundation for their tremendous funding support for this project. We also want to thank the United Leukodystrophy Foundation and Partners for Krabbe Research Foundation for helping promote this important study. Stay tuned as we work to get the full study published in a medical journal.

#krabbeconnect thanks Dr. Jim Wilson for his work in rare diseases and looks forward to learning more about how his company, Gemma Biotherapeutics, can help bring gene therapy to #krabbedisease.

We have entered the month of #RareDiseaseDay2025. To get us started, we’re sharing about a Rare Disease Day event at the University of Minnesota. Our President, Stacy Pike-Langenfeld, has been invited to be a panelist. We sure would like to see some families impacted by #krabbedisease in the audience. Use the QR code to register. It’s free to attend in person or virtually! Comment if you plan to attend

The United Leukodystrophy Foundation and KrabbeConnect are partnering again to bring you the latest information on #krabbedisease.?Last year more than 40 individuals impacted by #krabbedisease gathered to learn, discuss, and network.?Take a few minutes now to apply for a scholarship through #ulf here - https://lnkd.in/gZbKWYKY DEADLINE TO APPLY IS FEB 14TH! We can't wait to see you all this summer to discuss the next steps to #curekrabbe.

Announcement - Forge Biologics closes #krabbedisease program. There are no words for this type of devasting news and #krabbeconnect has little insight as to the “why” except for the information provided in this letter. ?? To the families - we know this is heart-breaking and we are here for you. We will all need time to absorb this information but #krabbeconnect is not giving up the fight to #curekrabbe.