Welcome to KrabbeConnect
KrabbeConnect is dedicated to improving care and finding a cure for Krabbe disease through collaboration across a network of patients, advocates, doctors, researchers, and organizations. Our goal is to bridge science and patient knowledge to improve care and find a cure. We are committed to a patient-centered approach, ensuring that the voices of patients and caregivers guide research and care.
Our Heroes
We are working towards a day in which each patient receives an early diagnosis, has access to state-of-the-art care, and lives a life free of Krabbe disease. Help us celebrate all of the Krabbe disease Heroes and join the fight to #curekrabbe!
Current & Upcoming Events
June 1, 2025
2025 Swing for Saylor Golf Tournament
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 to announce the Inaugural Swing for Saylor Golf Tournament, set to take place on Sunday, June 1st, 2025, at Emerald Greens Golf Course in […] Read More
June 28, 2025
2025 Krabbe Family Warrior Meet-up at the United Leukodystrophy Family Conference
This family meet-up will feature Krabbe-specific scientific, advocacy, and family support sessions. This meeting is designed to empower patients and their families by providing information and tools to help navigate Krabbe disease. KrabbeConnect wants you to use this time to connect and learn from others walking in your shoes, hear from the medical and research community on […] Read More
See’s Candies to Help #curekrabbe
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 way to send a gift to others while making a difference with your purchase! Participation is simple. Here’s how it works: You can ship […] Read More
Another shout out to our amazing sponsors! Our community is grateful for your support.
#krabbeconnect
#curekrabbe
#kdnewbornscreening
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RFRF has funded numerous research initiatives aimed at enhancing early detection, treatment, quality of life, and education for those affected by Krabbe disease. We are grateful for Rosenau Family Research Foundation support. We invite you to help us thank them!
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🇺🇸 On this #MemorialDay, we pause to honor and remember the brave men and women who gave their lives in service to our country.
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Happy Sunday. We invite you to take a moment to learn about the Wavrick family. We are heartbroken by the loss of Connor and deeply admire the family’s powerful advocacy for change in his memory.
#curekrabbe
#newbornscreening
Following loss of son, North Idaho family finds strength in advocacy
cdapress.com
Anjee Wavrick remembers her three-year-old son, Connor, as a hero.0 CommentsComment on Facebook
We're thrilled to welcome the incredible Sarah to the Krabbe Family Warrior Meeting on June 28 in Itasca, IL! 💜
With her deep connection to grief and #KrabbeDisease, Sarah brings compassion, insight, and heart to our community gathering.
More than 40 individuals impacted by Krabbe will be there — families who’ve had the opportunity to seek treatment, those who haven’t, and those grieving loved ones. No matter your journey, you belong here. Steps to register here: bit.ly/4iNlV9R
Join us as we stand united in the fight for a cure. 💪 #KrabbeWarrior #FamilyStrong
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Calling all researchers in #KrabbeDisease - Rosenau Family Research Foundation letter of intent is open. Two research projects #krabbeconnect is involved with due to RFRF funding are as follows:
1. Parent-Reported Disease Burden in Infantile and Late Infantile Krabbe Disease; A Comparison of Quality-of-Life Outcomes in Transplant and Non-or-Late Transplant Patients - publications will be available by the end of 2025. Presentations on the project will happen at the Krabbe Family Warrior Meeting on June 28th.
2. GenoKrabbe (Genotype/Phenotype Registry) - med.umn.edu/news/u-m-medical-school-receives-360000-grant-support-development-krabbe-disease-regi...
#curekrabbe
#scienceRosenau Family Research Foundation is now accepting Letters of Intent (LOI) for our 2025 spring grant cycle!
An LOI is the first step in the process to apply for grant funding. LOIs for the spring grant cycle are due July 31st, 2025.
Click for more information and to apply: rosenaufoundation.org/letter-of-intent/
Consideration will only be given to projects that:
1. Conduct research to develop or enhance treatments and cures for Krabbe disease and Cystic Fibrosis.
2. Promote education and awareness for the expansion of Newborn Screening, Krabbe disease, and Cystic Fibrosis; benefiting children with the increased probability of early identification and effective access to treatment.
Please email grants@rosenaufoundation.org with any questions.
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