KrabbeConnect

To reach 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.

06/02/2026

💙 Juvenile and Adult-Onset Krabbe Disease Matter, Too 💙

While infantile and late-infantile Krabbe disease are more commonly recognized, individuals living with juvenile and adult-onset Krabbe disease are an important part of our community and deserve support, understanding, and access to resources.

Because symptoms often develop gradually and can resemble other neurological conditions, many individuals experience a long and challenging diagnostic journey before receiving the correct diagnosis.

If you or someone you know has juvenile or adult-onset Krabbe disease, please know that you are not alone.

KrabbeConnect offers resources, education, support, and opportunities to connect with others who understand the journey.

📧 Reach out to us at [email protected] to learn more about available resources and support.

Together, we can ensure every individual affected by Krabbe disease feels seen, heard, and supported. 💙

06/01/2026

💙 Adult Krabbe Disease Support Group 💙

You are not alone.

Join us for a virtual support group designed for those diagnosed with juvenile and adult Krabbe disease. This is a safe space to connect with others who understand the unique challenges of Krabbe disease, share experiences, ask questions, and find support.

Whether you're newly diagnosed or have been navigating this journey for years, we invite you to join the conversation.

📍 Virtual via Zoom
🤝 Connection • Support • Community

Must be 18+ to register. Register here - https://us02web.zoom.us/meeting/register/5nXmE850TnOOKsk6vrTrjQ

Together, we are stronger. 💙

05/29/2026

💙 HYBRID FOR HOPE – TOMORROW AT 6:00 PM! 💙

Tomorrow, Michelle and Bre will take on the challenge of Hybrid for Hope—not just to test their strength, but to shine a light on Krabbe disease and the families affected by it.

Let's Support Michelle and Bre!

📸 Share a photo of yourself wearing your Hybrid for Hope gear.
💬 Leave words of encouragement for Michelle and Bre in the comments.
📢 Help spread awareness by sharing this post.

Awareness leads to action. Action leads to hope. Hope leads us closer to a cure.

Keep tabs on their progress here tomorrow - https://bit.ly/4ecgYrd

Further details on how to donate or get Hybrid for Hope gear here - https://krabbeconnect.org/kcevent/hybrid-for-hope/

We're rooting for you, Michelle and Bre! Thank you for being powerful voices for the Krabbe community. 💙

05/27/2026

We’re counting down the days until the 2026 Krabbe Family Warrior Meet-Up! 💙

With 60+ attendees, this will be our largest gathering yet — bringing together families, experts, advocates, and caregivers united by one mission: improving the lives of those impacted by Krabbe disease.

We can’t wait to learn, connect, support one another, and make lasting memories together. See you all soon!

05/26/2026

Big news for the Krabbe community — Mississippi is now screening all newborns for Krabbe disease. 💙

Early detection can mean a better chance at life, access to treatment, and more time for families to make critical decisions. This progress was built on the courage and stories of the children and adults we lost far too soon. Their lives continue to light the path forward for future generations.

To every family who shared their journey, advocated, educated, and refused to let their loved one be forgotten — thank you. Your voices created lasting change.

Next up on the journey toward newborn screening: California and Arizona! 🙌

05/21/2026

We can’t wait to see you on August 23rd! Your participation means so much as we come together to honor Avery’s legacy and support families impacted by Krabbe disease. Whether you swing a club, bid on amazing auction items, win a few prizes, or simply join us for dinner and community, every moment helps make a difference.

⛳ Golf with us
🎟️ Win prizes & enjoy raffles
🍽️ Join us for dinner and the auction only

Learn more and register here: https://krabbeconnect.org/kcevent/bravery-for-avery-golf-tournament/

05/19/2026

🎉 BINGO NIGHT is officially part of the 2026 Krabbe Family Warrior Meeting! 🎉

We’re so excited to add a fun evening for families to connect, laugh, play bingo, and win prizes together! 💙 Whether you’re coming to learn, share your story, or simply spend time with others who understand the journey of Krabbe disease — this night is for YOU.

🗓️ Saturday, June 27, 2026
⏰ 7:30 PM

We truly can’t wait to see everyone soon. The hugs, conversations, learning, and community support make this meeting so meaningful each year. 💫

📣 Full meeting agenda coming shortly Memorial Day!

05/14/2026

We are excited to share that Dr. Deepa Rajan, Co-Director of the Neuro-genetics Clinic at UPMC, will be joining us at the KrabbeConnect Family Meeting for a special “Ask the Doctor” session.

This is an incredible opportunity for families navigating Krabbe disease to ask questions, learn from an expert in the field, and have open conversations about care, treatment, and the challenges of this rare disease.

We are so grateful to Dr. Rajan for taking the time to connect directly with our community and help empower families through education and discussion.

Address

Rosemount, MN

Telephone

+18008005509

Website

https://krabbeconnect.org/

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