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
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’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
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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
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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
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
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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
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