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.

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.

05/12/2026

Rare diseases receive only a fraction of the funding and awareness they deserve. That’s why Michelle, VP of KrabbeConnect, is pushing her body through intense physical challenges — because it still pales in comparison to what children living with Krabbe disease endure every single day.

She’s choosing discomfort to bring awareness. She’s choosing action because families affected by Krabbe don’t get a choice.

Can you help us turn sweat into support, awareness into action, and hope into progress? Every donation helps move us closer to better treatments and one day, a cure.

Donate here today: https://secure.qgiv.com/for/mkwctc

05/11/2026

We want you to know it all — the latest breakthroughs in Krabbe disease research, the people working behind the scenes to support our mission, upcoming events, family opportunities, advocacy efforts, and ways your loved one can be part of meaningful projects helping move us closer to . 💙

Join the KrabbeConnect community as we learn, connect, advocate, and work together toward better outcomes for families impacted by Krabbe disease.

Visit KrabbeConnect.org, scroll to the bottom of the page, and sign up for our newsletter today. We’d love to stay connected with you!

05/10/2026

Today, we honor all mothers impacted by Krabbe disease.
The moms raising young children, the moms caring for adult children, mothers living with Krabbe disease themselves, the grieving moms living without their child beside them, the grandmothers, stepmothers, and mother figures walking this journey with love and strength.

No two Mother’s Days look the same, and we recognize the many emotions this day can hold.

From all of us at KrabbeConnect, we are thinking of you today and honoring your courage, devotion, and endless love. Wishing you moments of peace, comfort, sunshine, and support today. 💜

05/08/2026

💙 We’re excited to announce one of our meeting sponsors — Polaryx Therapeutics!

Polaryx will be presenting on , a Phase 2, open-label, basket designed to target multiple lysosomal storage disorders (LSDs) with similar underlying disease mechanisms — with Krabbe disease included as one of the conditions they aim to treat.

We are incredibly grateful for their support. 💙 All sponsorship dollars directly help families attend this meeting, making connection, education, and support possible for our community.

Please join us in thanking Polaryx for standing alongside families impacted by Krabbe disease.

👉 Learn more about the meeting .org

Address

Rosemount, MN

Telephone

+18008005509

Website

https://krabbeconnect.org/

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