KrabbeConnect

12/18/2025

Amazing News! Our publication has been accepted by Orphanet Journal of Rare Disorders. A few last steps are needed before the journal will make it available to the public.

This milestone matters because:

*40+ families courageously participated, sharing detailed insights into their journey with Krabbe disease.

*Families met virtually with Engage Health to provide robust, real-world data about the challenges and decisions they faced.

*Dr. Nicholas Bascou and Dr. Paul Orchard provided expert oversight—ensuring the data was carefully reviewed, analyzed, and categorized to the highest scientific standards.

*This is the first study of its kind in Krabbe disease to compare caregiver burden across transplant timing and disease onset.

*These findings will help families and clinicians make more informed decisions about transplant and support future research, care, and advocacy efforts.

This publication is a testament to the strength of the Krabbe community and the ongoing commitment to improving care, quality of life, and access to treatment.

This critical research required an investment of more than $200,000, generously funded through a grant from the Rosenau Family Research Foundation.

12/17/2025

ICYMI - Stacy went live today to talk about the $25,000 Match Campaign

You can text the phone number 707070- text the phrase - [krabbematch25] - you will receive a direct link to donate or click here: https://www.pledge.to/2025-match-my-gift-to-krabbeconnect

https://www.facebook.com/share/v/1KfHVSVMXk/

12/17/2025

We Need Your Help - KrabbeMatch25

12/16/2025

ICYMI — here’s a powerful article on the importance of .

As many of you know, Forge Biologics recently closed their clinical trial that had been one of the most instrumental advancements in the history of Krabbe disease. While this was a devastating loss for our community, KrabbeConnect is actively working with partners to help revive and support opportunities to bring this critical research back.

You can be part of making that possible.
By making a donation today, your gift will be doubled thanks to a generous donor—directly supporting efforts to restore and advance clinical research that families desperately need.

Together, we can help reopen doors that were unexpectedly closed and push forward toward meaningful treatment options for those living with Krabbe disease.

Donate here: https://www.pledge.to/2025-match-my-gift-to-krabbeconnect

In 2024, a newborn from Minnesota was diagnosed with a rare congenital disorder called Krabbe disease. The infantile type of Krabbe disease does not show symptoms before it has caused irreversible brain damage. Seizures, blindness, deafness, and death within the first two years of life are typical.

12/12/2025

Setting boundaries during the holidays is not only okay—it’s essential. 💛

Thank you to Sarah Thomas, MSW/LICSW, for providing these thoughtful “Holiday Boundary Statements” to help families protect their time, energy, and emotional space this season.

If you’d like the full list of boundary statements Sarah created, just send us an email at info@krabbeconnect.org and we’ll be happy to share the complete document.

You are not alone, and your needs matter. 💛

12/10/2025

For many in the Krabbe community, the holidays bring mixed emotions—grief, stress, caregiving pressures, and everything in between. You’re not alone.

Take 20 minutes to listen to this heartfelt conversation with Sarah Thomas, MSW, LICSW, and give yourself a moment of care this season.

https://youtu.be/iH26VV6m_go

The holidays can be challenging, especially when you’re carrying the weight of caregiving or the grief of losing a child to Krabbe disease. Sometimes, you ju...

12/08/2025

Because of YOU, families battling Krabbe disease receive help when they need it most. This holiday season, your kindness becomes meals, medical equipment, gas for hospital trips, and a moment of peace.

We’re so grateful for your support. If you feel moved to help, even a small gift of $5 becomes $10 with our match. Together we can turn $25,000 into $50,000!
Donate: https://www.pledge.to/2025-match-my-gift-to-krabbeconnect

Text KRABBEMATCH25 to 707070 to donate

12/07/2025

Join us in 1 hour for a supportive conversation and take a moment for you this season. 💛
A few more spots available, simple register here:
https://us02web.zoom.us/.../register/sG4gt7xzTiCk7glqF53Vkw

As a small gesture of comfort, all participants who join us on December 7th will receive a complimentary coffee to enjoy later.

12/03/2025

ICYMI - KrabbeConnect wants you to feel supported and have a few tools as you entered into the holidays. Limited spots available and filling fast.

Previous post information -
The holidays can be challenging, especially when you’re carrying the weight of caregiving or the grief of losing a child to Krabbe disease. Sometimes, you just need a safe space to acknowledge those feelings and talk with others who truly understand.

Join us for this supportive conversation and take a moment for you this season. 💛

10 spots available - register here - https://us02web.zoom.us/.../register/sG4gt7xzTiCk7glqF53Vkw

As a small gesture of comfort, all participants who join us on December 7th will receive a complimentary coffee to enjoy later.

12/02/2025

We just received a $5000 donation to our general fund - help us reach another $20,000 today. We’re so grateful 💕.

Click here - https://www.pledge.to/2025-match-my-gift-to-krabbeconnect

Welcome to the "2025 Match My Gift to KrabbeConnect" Fundraiser! We are excited to invite you to be a part of an inspiring journey with KrabbeConnect, a nonprofit organization dedicated to creating a brighter future for individuals and families affected by Krabbe disease. Krabbe disease is a rare an...

12/01/2025

This Giving Tuesday, tomorrow (12.2), we need your help so we can continue showing up for every family impacted by Krabbe disease. 💙

Thanks to our “2025 Match My Gift to KrabbeConnect” fund-raiser, every dollar you give will be MATCHED — Just text the word (no space and all caps) KRABBEMATCH25 to the phone number 707070- you will receive a text to complete your donation!

Right now, families are struggling more than ever as Medicaid and special-needs program funding is being cut. Many can no longer rely solely on coverage for the expensive care and services their loved ones need.

Your matched donation today could be the lifeline a family desperately needs.

Will you give what you can — and make it go twice as far? 🤍

Donate, share, and help us spread the word.