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
March 20, 2026
2026 Putt-Putt to #CureKrabbe
Join us for a fun evening of miniature golf while giving back to families impacted by Krabbe disease! Putt-Putt to #CureKrabbe brings together community members, professionals, and advocates for friendly competition, connection, and purpose. Why This Event Matters Funds raised through Putt-Putt to #CureKrabbe directly support individuals and families navigating Krabbe disease by: Your participation […] Read More
June 27, 2026
2026 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 […] Read More
ONGOING
Be the Story — Krabbe Disease Newborn Screening Campaign
Are you interested in being the face of our Krabbe disease newborn screening state fact sheets? We’re on a mission to help bring more education and awareness to Krabbe disease newborn screening. All 50 states must be testing for this condition now to prevent a delayed diagnosis, especially in the most severe forms. You can be the story to help change Krabbe disease. See which states across the USA do not have a Krabbe disease fact sheet. If your state is not listed, we invite you to share your story. Read More
We can’t wait to gather again for the KrabbeConnect Family Warrior Meeting on June 26–27, 2026 at the Hilton Chicago/Oakbrook Resort.
We know travel and lodging costs can be a barrier for many families. Because connection, learning, and support matter, details about our family scholarship program to help offset costs will be available by the end of March (or sooner).
At KrabbeConnect, we are committed to making sure families impacted by Krabbe disease have the opportunity to:
💙 Connect with other families who understand
💙 Learn from experts and one another
💙 Share experiences, resources, and hope
Stay tuned for scholarship information and registration details soon. We hope to see you there. 💙
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We want to extend our heartfelt thanks to Kevin Cushman and Judy for sharing their story and continuing to fight for families impacted by Krabbe disease. 💙
Their powerful advocacy — including more than a decade of persistence after losing their son Collin — helped move Wisconsin forward in adding Krabbe disease to newborn screening, ensuring more babies will have the chance at early detection and treatment.
Because of families like the Cushmans, progress happens. Because of their courage, more children will have hope.
We are grateful to stand alongside you and honor Collin’s legacy as we continue working together to #CureKrabbe.
🎥 Watch the story here:
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For more than 17 years, Tammy has been a steady thread in the Krabbe community. 💙 She’s a mom of five — two of her boys were diagnosed with Krabbe disease.
Marshall was diagnosed when the family learned they were expecting Michael. Marshall, who passed away in 2016, just four months shy of his 7th birthday, saved his younger brother.
Because of their journey, March encompasses life and loss for their family.
In honor of Marshall — and for Michael and every family facing Krabbe — Tammy is giving back through a fundraiser to support families who understand just how hard and unpredictable this disease can be. While Michael is doing well, there is still no cure, and no one knows what the future holds.
Let’s surround Tammy and her family with the same love they’ve given this community for so many years.
💙 Give in honor of Marshall & Michael (M&M).
💙 Share to spread awareness.
💙 Stand with families facing Krabbe.
#CureKrabbe #KrabbeConnect #RareDiseaseCommunity
Click to donate to Tammy Wilson Facebook fundraiser here -
www.facebook.com/share/p/183N39ZZbw/
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🚨 HALF-OFF ALERT — Let’s Fill the Course 💙
We’re heading into the final stretch for Putt-Putt to #CureKrabbe, and we want YOU there.
For a limited time, we’re offering 50% OFF registration to help bring more people together for a fun night that truly makes a difference.
⛳ Mini golf
💙 Families impacted by Krabbe disease
🎁 Auction + prizes
✨ A night of purpose, connection, and community
Every registration helps fund research, family support, and the programs we’re building together at KrabbeConnect.
Grab your team, shake off the cabin fever, and come putt for a cause.
👉 Register now: krabbeconnect.org/kcevent/putt-putt-to-curekrabbe/
Enter promo code [half] to receive 50% off
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For many, Monday means back to routine after a weekend of rest.
But for families caring for a loved one impacted by Krabbe disease, weekends don’t always look different from weekdays. The medications still need to be given. The therapies still need to happen. The equipment still needs managing. The monitoring never really pauses.
At KrabbeConnect, we see you.
And while your Monday may look different than most — please know this:
We keep working for you.
We advocate for you.
We push for newborn screening.
We support research.
We build programs to ease the burden where we can.
We are with you — today and every day.
#curekrabbe #krabbeconnect #KrabbeDisease
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Saturday, February 28 is Rare Disease Day.
Bentley’s transplant gives him more years — but Krabbe still needs a cure.
Funding rare disease research is hard.
Help us change that.
Share. Donate. Learn. 💙
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