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.

03/16/2026

📣 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. 💜

03/13/2026

Happy Friday! Sometimes things come together quicker than we anticipate — and we’re excited to share that all meeting details are now available at https://krabbeconnect.org/kcevent/krabbe-family-warrior-meet-up-at-the-united-leukodystrophy-family-conference/

Please know we are over the moon excited to welcome you. We remain committed to doing our best to help reduce the financial burden so families can attend, connect, and learn together.

If you have any questions, please reach out anytime at info@krabbeconnect.org - We can’t wait to see you. 💙

03/12/2026

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. 💙

03/10/2026

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 .

🎥 Watch the story here:

03/09/2026

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.

Click to donate to Tammy Wilson Facebook fundraiser here -
https://www.facebook.com/share/p/183N39ZZbw/

03/06/2026

🚨 HALF-OFF ALERT — Let’s Fill the Course 💙

We’re heading into the final stretch for Putt-Putt to , 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: https://krabbeconnect.org/kcevent/putt-putt-to-curekrabbe/

Enter promo code [half] to receive 50% off

03/02/2026

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.

02/26/2026

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. 💙

02/24/2026

Sleep. Or the lack of it.

In our peer-reviewed publication, Caregiver-Reported Disease Burden in Krabbe Disease: Evaluating Outcomes of Hematopoietic Stem Cell Transplantation, families shared what sleep really looks like while caring for a child with infantile Krabbe disease (IKD), transplanted.

Theses are just a few of the quotes we received. These quotes reflect chronic exhaustion, anxiety, long-term health impacts, and the invisible toll rare disease caregiving takes on families.

This is why caregiver-reported data matters.
This is why newborn screening matters.
This is why access to treatment, resources, and coordinated care matters.

When we talk about outcomes, we must talk about the whole family. We invite families and individuals living with Krabbe disease to comment further on sleep patterns.

📖 Scan to read the full peer-reviewed article.

02/23/2026

Nikola’s story is why we show up. 💛

It’s why we build community.
It’s why we fund research.
It’s why we refuse to stop pushing for better outcomes for families facing Krabbe disease.

Now we’re inviting you to be part of that hope.

⛳ Putt-Putt to isn’t just a fun night out — it’s a chance to stand beside families like Nikola’s and say, you are not alone.

Every ticket.
Every sponsorship.
Every single putt.

It all helps reduce the medical burden for families and fuels the work that moves us closer to a cure.

Come laugh. Compete. Connect. Make a difference. Register here today - https://krabbeconnect.org/kcevent/putt-putt-to-curekrabbe/

🎥 Watch Nikola’s full story here:
https://youtu.be/xLEF26UuetY?si=KwHT9TH7urYabo2Y

Then grab your putter and register to join us.

Because when we show up together — hope gets louder. 💙

02/20/2026

💙🧡 **Rare Disease Day – February 28** 🧡💙

On February 28th, we join millions around the world to recognize **Rare Disease Day** — a day dedicated to raising awareness, advancing research, and standing alongside families navigating rare conditions like **Krabbe disease**.

At KrabbeConnect, we “Show Our Stripes” for:
🧬 Earlier diagnosis through newborn screening
💛 Stronger patient support and reduced medical burden
🔬 Innovative research and treatment development
🌎 A future where no family faces Krabbe alone

Krabbe disease may be rare, but our community is powerful. Together, we amplify voices, educate policymakers, support families, and push for progress.

📸 Download the “Show Your Stripes” template and tell us who you’re showing your stripes for.
Tag us and use

Because rare is many. And together, we are louder.

Link to download photo - https://bit.ly/4rudK6M

02/18/2026

For children identified through newborn screening as low-risk for late-onset Krabbe disease, progression in infancy is less likely — and follow-up can be thoughtfully tailored. We invite you to review the graphic below or check out the full publication here - https://pubmed.ncbi.nlm.nih.gov/33832819/

Address

Rosemount, MN

Telephone

+18008005509

Website

https://krabbeconnect.org/

Alerts

Be the first to know and let us send you an email when KrabbeConnect posts news and promotions. Your email address will not be used for any other purpose, and you can unsubscribe at any time.

Contact The Practice

Send a message to KrabbeConnect:

Shortcuts

Want your practice to be the top-listed Clinic in Rosemount?

About Us

Founders, Stacy Pike and Anne Rugari, formed KrabbeConnect, a 501 (c)(3) in 2017, to bridge the gap between science and patient knowledge.

The idea for KrabbeConnect originated from the 2015 Family Centered-Krabbe Translational Research Network meeting (FC-KTRN), a collaborative meeting between researchers and families to aid in solving the uncertainties of Krabbe disease. Through KrabbeConnect, the foundation provides a platform to amplify the voice of patients, aiding researchers and drug developers in accelerating research for better treatments for Krabbe disease.

KrabbeConnect’s dedication and efforts will advance research, provide family support, enhance education, and raise awareness, one step at a time. The organization will encourage patients, caregivers, medical scientists, clinicians, industry, and the government to work together quickly to assure a better life for patients. KrabbeConnect believes advances are made when we align ourselves with the same goal, improving the quality of life of those diagnosed with Krabbe disease.

We encourage you to learn more about us by understanding our Mission, Vision, and Multi-Center Approach here. If you have questions or want to connect with us, please Contact Us. We would love to hear from you!