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
May 1, 2026
HYBRID for Hope: Michelle Salvo’s Campaign to #curekrabbe
This is more than a race. This is a mission. Michelle and her training partner, Bre, are taking on a HYROX race as part of Hybrid for Hope—turning strength, endurance, and discipline into support for families impacted by Krabbe disease. This cause is deeply personal. Michelle has seen firsthand the strength it takes for families […] 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
💥 Carry Their Name. Fuel the Fight. 💥
Krabbe families—this is for you.
For a $10 donation, your loved one’s name will be printed on Michelle’s race apparel as she takes on HYROX NYC 2026.
She runs with purpose. She runs for them.
⏳ Deadline: May 1, 2026
👉 Donate: secure.qgiv.com/for/enmhfht2f
👉 Add your hero: forms.gle/8LRukwHTYkiVNc3d9
Let’s fill her shirt with warriors. 💜 #curekrabbe
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Six kids recently received gene therapyA type of therapy that offers hope and promise for a cure for many genetic disorders. A working copy of the gene replaces the non-working copy of the gene. Gene therapy is at the forefront of many, a life-saving therapy for Krabbe disease. Today—it’s gone due to lack of funding.
Tomorrow, the President and Co-founder (Stacy Pike-Langenfeld) of KrabbeConnect will celebrate what would’ve been her daughter’s (Makayla) 25th birthday. Stacy, has dedicated her life to changing this—unpaid, tireless, relentless.
This week, join Michelle’s Hybrid for Hope:
25 push-ups. 25 pull-ups. 25 burpees. $25
Because small actions, together, create real change.
Because no therapy should disappear when lives are on the line.
To give click here: secure.qgiv.com/for/mkwctc
Like, follow, share Michelle's work to spread awareness and raise funds for a cure: www.facebook.com/share/1Cby8ahQt3/
#curekrabbe #hybridforhope
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Behind every Krabbe diagnosis is a story we don’t always see.
Meet Amanda DeRossett, one of our 2026 Krabbe Warrior Family Meeting speakers. 💙
After welcoming her son Tygh and facing his diagnosis, Amanda found herself in a place many caregivers quietly experience—but rarely talk about.
She lost herself.
Through depression.
Through emotional eating.
Through a cycle that felt impossible to break.
But her story doesn’t end there.
Amanda will courageously share her journey—what it felt like to lose herself, what helped her begin to heal, and how she found her way back to strength.
Join us on June 27th at the Krabbe disease Family Warrior Meeting as Amanda shares a story that so many will see themselves in—but may not have the words to express. Visit KrabbeConnect.org for all the details.
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The first year after a Krabbe diagnosis can feel overwhelming… filled with questions, fear, and emotions you never expected to carry.
You don’t have to navigate this alone. 💙
Join us for Connect & Learn: Navigating the First Year After Diagnosis, a supportive virtual gathering for families diagnosed within the past 12 months. This session will be led by licensed social worker Sarah Thomas, who understands the weight of this journey and will help guide conversation around processing emotions, coping, and finding your footing.
✨ A safe space to share
✨ A place to connect with others who understand
✨ Support when you need it most
👉 Sign up today: us02web.zoom.us/meeting/register/C3Vg0LqWQyODWcAO9WHnQg
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ICYMI - 📣 Parents & Caregivers — Your Voice Matters
Have you ever received a positive newborn screen result for Krabbe disease?
Researchers want to learn directly from you. This important study is exploring how healthcare providers communicate with families during one of the most emotional and overwhelming moments — so future conversations can be more compassionate, clear, and supportive. 💜
🔹 Who can join:
Parents or caregivers of children who had a positive newborn screen result for Krabbe disease. Thank you for helping shape better care for our community. 💜
#CureKrabbe #RareDisease #NewbornScreening #KrabbeConnect
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This is what community looks like. 💙
Families, caregivers, and warriors coming together to share stories, support one another, and remind each other they are not alone in this fight.
📍 Krabbe Family Warrior Meeting
🗓 June 27, 2026
If you’ve ever needed a place where people truly understand—this is it.
All info here - krabbeconnect.org/kcevent/krabbe-family-warrior-meet-up-at-the-united-leukodystrophy-family-confe...
#curekrabbe #KrabbeFamilies #YouAreNotAlone
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