KrabbeConnect

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

03/31/2026

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. 💜

03/30/2026

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

03/25/2026

At KrabbeConnect, we’ve had the opportunity to meet with the Polaryx team at the WORLD Symposium and most recently at KTRN, where meaningful conversations are happening around advancing therapies and better understanding patient needs.

Progress in rare disease doesn’t happen in isolation—it takes collaboration between researchers, biotech, and the patient community.

We remain hopeful as we continue to advocate for treatments that can impact all forms of Krabbe disease, including those often overlooked.

💙 Together, we keep pushing forward.

03/23/2026

When Krabbe disease impacts a child or an adult, the needs do not happen just once. They come month after month — from urgent comfort items and adaptive equipment to travel support, family assistance, and patient-centered research efforts.

By becoming a monthly donor to KrabbeConnect, you provide steady, reliable support that helps families feel less alone and helps us continue building a stronger future for those impacted by Krabbe disease.

Click here now to sign-up: https://krabbeconnect.org/donate/become-a-monthly-donor-join-the-champions-for-change-circle/

03/18/2026

We’re honored to support KTRN 2026 as a Non-Profit Sponsor. 💙

At KrabbeConnect, we believe meaningful progress happens when researchers, clinicians, industry leaders, and families come together with shared purpose. We’re grateful for the opportunity to stand alongside this community to help shape the roadmap for Krabbe science and innovation.

Most importantly, we carry the voices and lived experiences of families with us into every conversation. Thank you to the KTRN team for your leadership and for creating space for collaboration that moves this field forward.

We’re looking forward to the important discussions ahead - reach out to us at info@krabbeconnect.org to meet with us at the KTRN.

KTRN 2026 is quickly approaching! We have an exciting lineup of speakers and workshops on the docket, and are anticipating some in-depth presentations and discussions that will help our community create a roadmap for Krabbe disease-related science and innovation through 2030 and beyond.

We would like to take the opportunity to express our gratitude to KrabbeConnect for being a Non-Profit Sponsor of KTRN 2026. Support from our network is what makes these meetings possible. Thank you to KrabbeConnect for playing an integral role in bringing this group of experts and leaders together to push the needle forward!

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/