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.

04/28/2026

ICYMI - Deadline is Friday!

💥 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 (VP of KrabbeConnect) race apparel as she takes on HYROX NYC 2026.

She runs with purpose. She runs for them.

⏳ Deadline: May 1, 2026
👉 Donate: https://secure.qgiv.com/for/enmhfht2f
👉 Add your hero: https://forms.gle/8LRukwHTYkiVNc3d9

Follow her journey here: https://www.facebook.com/share/17d4CpbnAY/

Let’s fill her shirt with warriors. 💜

04/27/2026

ALERT!! Last Day to Register for the Financial Stipend!

We’re almost at capacity with 15 families navigating already registered—parents, siblings, grandparents… and we can’t WAIT to be together 💜

How about you?
The conversations. The hugs. The learning.

The feeling of being surrounded by people who truly understand.
Don’t miss this opportunity to connect, learn, and be part of something so meaningful.

👉 Register now: https://krabbeconnect.org/kcevent/krabbe-family-warrior-meet-up-at-the-united-leukodystrophy-family-conference/

04/23/2026

✨ Hope on the Horizon for Krabbe Disease ✨

We’re encouraged to see progress in the rare disease space—especially for our Krabbe community.

A recent announcement from Polaryx Therapeutics shares that their therapy PLX-200 has received FDA Fast Track designation for Krabbe disease and other related conditions.

💡 What does this mean for families?

“Fast Track” helps speed up the development and review of potential treatments for serious diseases with unmet need.

PLX-200 will be studied in the SOTERIA clinical trial, expected to begin in 2026.

This trial will evaluate safety and potential benefit in multiple rare diseases, including Krabbe.

While this is not a cure today, it’s an important step forward—and a reminder that research is moving, because of families like yours.

💜 Every story shared, every study joined, and every dollar raised helps make progress like this possible.

Full press release here - https://bit.ly/3OT34Ax

04/21/2026

Join us to connect with families, learn from experts, and stay updated on Krabbe advancements 💜

Register here - https://krabbeconnect.org/kcevent/krabbe-family-warrior-meet-up-at-the-united-leukodystrophy-family-conference

04/16/2026

Change doesn’t happen all at once… it happens every month.

Become a Champion for Change 💙
Your monthly gift helps fund research, support families, and move us closer to a cure for Krabbe disease.

No gift is too small—because together, it adds up to something powerful.

👉 Join here: https://krabbeconnect.org/donate/become-a-monthly-donor-join-the-champions-for-change-circle/

04/15/2026

The path to a treatment for Krabbe disease is not a straight line. Set back happens and are devastating for families who are waiting, hoping, and fighting every day.

But this is the reality of rare disease research. Progress takes time, resources, and unwavering commitment. When one path closes, we must work even harder to open the next.

Each step—from understanding the disease to testing safety and effectiveness—takes time, care, and collaboration. These steps aren’t delays… they’re what ensure treatments are safe, effective, and truly make a difference.

We feel the urgency. We live it every day.

We are deeply grateful to every family who has shared their story, contributed to research, and fundraised to help move us closer to

04/14/2026

ICYMI- Happening tonight! Sign-up here now - https://us02web.zoom.us/.../register/C3Vg0LqWQyODWcAO9WHnQg

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: https://us02web.zoom.us/.../register/C3Vg0LqWQyODWcAO9WHnQg

04/09/2026

💥 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: https://secure.qgiv.com/for/enmhfht2f

👉 Add your hero: https://forms.gle/8LRukwHTYkiVNc3d9

Let’s fill her shirt with warriors. 💜

04/07/2026

Six kids recently received gene therapy, 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: https://secure.qgiv.com/for/mkwctc

Like, follow, share Michelle's work to spread awareness and raise funds for a cure: https://www.facebook.com/share/1Cby8ahQt3/

04/03/2026

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.

04/02/2026

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: https://us02web.zoom.us/meeting/register/C3Vg0LqWQyODWcAO9WHnQg

Address

Rosemount, MN

Telephone

+18008005509

Website

https://krabbeconnect.org/

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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!